Cliff refused to get in the passenger seat today

[clifffaith]

At the end of June they took four vials of blood from Cliff to do a special blood test. His bladder cancer is “sort of” in remission, but they do a cystoscopy exam every three months and various body scans every six months. His urologist thought he’d be a good candidate for the test which looks for cancer cells in the blood before the cancer is visible on scans. They found cancer cells so he was referred back to his oncologist to plan our next course of action.

We got right in with an appointment at 12:30 today. As we were leaving the house at 11:15 Cliff started saying “who made you boss of the car”. Not the first time I’ve heard this, but I was surprised today because this usually comes up when I’m stressed from trying to move him along and he’s pissed I’m rushing him (I always give him two hours from feet on the floor to out the door with regular reminders as to when we’re leaving and where we’re going), and today I allowed extra time and let him nap after his shower, so no urgency. No amount of cajoling would get him into the car except as a driver, and he stormed back upstairs.

I drove the car around to the front of the building so he wouldn’t get into it and drive away, and went in to Health Services to check on why we hadn’t heard from the DMV regarding revoking his license. I’d asked them to do this back in April after the DMV saw fit to issue a license to an 88 year old man without asking him any questions (hard ones like what is your address). I wanted our PCP and I to have plausible deniability and I thought his score of 21 on the annual cognitive test was a good reason for them to make the request.

One of the LVNs offered to speak with him so we met back at our apartment and he was gone. I told her he was likely down in the clubhouse reading the paper, so she went down to find him. When she questioned him he did not know what year it is, responded “we aren’t in the city” when asked which city we were in (we are not rural so not sure what he meant), but wonder of wonders he knew his name! When asked why he wouldn’t get on the car the answer was that I’m taking his independence.

So at this point we have a phone call with the oncologist tomorrow, but it is unclear to me how he expects to get to UCI for treatment. And I have an appointment with our PCP Friday, and I was dragging him along anyway because they need him to give them permission to give me access to his MyChart. She has already been warned that we need to tell him we jointly are turning his name in to DMV. It would be so much easier if he did a crappy job driving, but he is fine except for the worry his brain will short circuit at the wrong time due to his cognitive issues.

 

[magmue]

So hard to be working overtime to hold things together for both of you and then have your partner pushing back.

 

[clifffaith]

So hard to be working overtime to hold things together for both of you and then have your partner pushing back.

Amen to that!

 

[magmue]

I've been there.

I lost my first husband 12 years ago to end-stage liver disease due to Hepatitis C, made worse by his ongoing use of alcohol - toxic for a damaged liver even at social drinking levels. He was on a liver transplant list, and spiraling into cirrhosis with ascites (fluid accumulating in the abdomen that has to be drained off) and hepatic encephalopathy, where liver toxins build up in the brain with confusion and possible coma. I was working full time to maintain good health insurance and to save leave time for his post-transplant recovery. Long (sad) story short, he got to the top of the transplant list before he died.

I am happily remarried for the last 9 years, but DH is 12 years older than me. His brain is fine, but his body - at 87 - is getting more fragile despite good health habits.

 

[Sandi Bo]

So sorry you are having to deal with this (as well as everything else). No one wants to be the bad guy and take the license away (making it that much harder for you). Best of luck to you with all of this

 

[b2bailey]

I'm so sorry you are having to go through additional stress and complications related to driving. His illness alone is more than enough stress.

 

[T_R_Oglodyte]

Gad - you and my Mom would have related!

FWIW - my reaction, as the son observing my parents ... my Mom put herself through so much agony dealing with his "eccentricities". At the same time, it was her choice to do so instead of moving him to a memory care unit. The toll exhibited in your narrative is so much like my mother.

If I can offer any advice .... it is to consider whether it is time to let go. In life we move through phases, and those are difficult. But we need to approach them with a clear head.

 

[Travelingman1]

I am so sorry you are going through this. Being a caregiver in this situation sounds incredibly stressful. I am sending you thoughts of strength and wish you the very best.

 

[rapmarks]

21 is a pretty high score, certainly not the range for memory care.
Have you tried the line, I will drive and you give me the directions. Even if he can’t give directions.
My husband took four hours to get dressed, and when he went in the home it took four of them to get him dressed. The thing you have going for you is Cliff is so much older, he may never reach this stage.
Getting to appointments is always a high stress situation, one that doctors don’t realize. Can any of his appointments be telehealth? Or maybe arrange for an uber?

 

[Patri]

Even when his license is taken away, it won’t change his behavior. That is the least of your worries.

 

[moonstone]

Even when his license is taken away, it won’t change his behavior.

Very true! I have seen and heard about several people (mostly men since they have a thing about being able to drive) who had their license taken away for various reasons and continued to drive because, as one guy told me, "they took away my license but didnt take my keys!"

After my mom got lost for 7+ hours overnight in the wilds of the Ontario cottage country, we (my dad & I) decided she wasnt safe to be driving anymore. She was subsequently diagnosed with vascular dementia. Dad was in the hospital near the cottage where mom left from after visiting him. Mom eventually found her way back to their house about 90 minutes south. DH & I got to the house shortly after their neighbour told us mom had arrived and since she had been up all night she wanted to take a nap. While she was sleeping I went into her purse and wallet for the first time in my life and took her drivers license and her car key. Her DL was in a window that was visible as soon as you opened up the wallet so I put her health card in that spot. It was many days later when she called me to say she couldnt find her car key. She had lost other keys before when she put them in odd places. I said well it must be in the house somewhere, you just had it last week and then changed the subject. When dad returned home he was careful to keep his copy of her car key in his pocket at all times and at night he hid it in case mom went looking for it. It was many weeks, maybe months, later when mom finally realized her DL wasnt in her wallet. I just said maybe it is in the same place as your car key and changed the subject again. Once in a while she would say to dad that she wanted to go somewhere in her car and he would say as soon as you find your key and your license. They left for the winter in Florida soon after with only their motorhome for transportation so mom never asked about driving again.


~Diane

 

[Luanne]

I am so sorry you are going through this. A friend of mine (she's 90) is going through this with her husband. She said he is still a very good driver, and he will drive if she's in the car with him. A couple of times he found the keys and went out on his own and got lost. There is an airtag on the car, and on him, but it still took awhile one time for their son to find him. I think they would be better off getting rid of the car, but she still does drive, though not much. Her husband has dementia.

 

[rapmarks]

It must have been six years before he passed away, I had decided we would no longer drive from Wisconsin to Florida, but my husband still drove. We had spent the week at Siesta Key, and stopped for gas. At that time, I turned the headlights on and told him what I did. As we were driving on I75 at dusk, he began to flip the lights on and off, I was counting and told him turn them back on. He kept doing that so many times I lost count and it was dark, but I75 was lit up.
A motorcycle went by and yelled your lights are out. After that, I drove whenever we were together, and he only drove the one mile in our subdivision to the pro shop for golf, 20 mph speed limit.
The next year, he only had to take the vision test, which he flubbed because he insisted there was no line four and refused to read it. No license, no more driving the one mile.

He never had an accident or a ticket, but he did leave the suv back hatch up and closed the garage door so that it was stuck on the garage door. Nearly ripped it right off the car.
He blamed me until his dying day for the loss of his license.

 

[easyrider]

Even when his license is taken away, it won’t change his behavior. That is the least of your worries.

This was our experience. For us it was the deterioration of their health that changed their abilities and behavior. It happened suddenly like in the snap of the fingers. While we were not smiling back then, we now smile telling stories of the shenanigans of my wife's parents in their last years.

Bill

 

[heathpack]

Oh boy that's tough. I have no practical advice.

 

[Luanne]

Even when his license is taken away, it won’t change his behavior. That is the least of your worries.

True. My friend said her husband doesn't care, and probably doesn't even know, if he has a driver's license.

 

[Talent312]

I know an elderly woman who's husband had dementia.
When he got violent, she'd call the police. They'd wait until he calmed down.

Once, he found the car keys and drove two hours away via the interstate.
He was found thru a "silver alert" and a friend retrieved him.

IOW, as bad as it is now, it could get worse.
In the meantime, remember to take care of yourself.

 

[T_R_Oglodyte]

My Mom didn't drive. My Dad was far beyond the state where he should be operating a vehicle. On one of my visits I disabled the car so he could not drive it, in a way I was confident he would not be able to diagnose and fix.

I told my Mom what I was going to do, and she didn't object. I then realized that she was glad I disabled the car. She knew it needed to be done, but she was so plagued by guilt feelings about cutting him off from the car that she wouldn't be complicit in doing so. When I disabled the car myself, on my own initiative, I freed her of any guilt feelings about taking the car away from him.

 

[clifffaith]

Our PCP was compassionate but firm with him today. No more driving. He blamed me putting ideas in her head. She said “no, the only reason I didn’t notify the DMV two years ago is because you had Faith to help monitor you”. Once again he didn’t know what year it is, and doesn’t see that as a problem. She wasn’t able to impress upon him that he won’t be taking a driving test, this is it, he’ll be invited into get a California ID. She wrote him a short letter and gave him a copy of the form. He sputtered about her checking the confusion and difficulty walking boxes, among others. It was clear by the comments he was making on the way home that he doesn’t get that this is permanent.

He’s been downstairs in the library all afternoon so unclear if he has cooled off. His sister called him and repeatedly told him that I love him and am doing what is best for him, then called me to tell me the same. He claims he doesn’t like my driving (after bragging endlessly about my excellent freeway driving skills to my mother when we moved here five years ago), so unclear how we are getting him to his scans at the end of the month. I’m ready to jettison UCI to use closer medical services so Reata Glen can transport him if necessary. I did find out that the specialty blood test hasn’t picked up random cancer, it has picked up bladder cancer cells that have found a new home somewhere. They are repeating that test next week to be sure they get a second positive result.

 

[rapmarks]

Just change the subject, no use reasoning with him. It’s tough

 

[heitmullerj02]

Maybe try the math approach? Figure how much the car costs vs Uber or Lyft. You can designate as a senior. You still have freedom, get dropped at the door, no hunting for parking. There are many pluses to letting the car and insurance costs go. I hope when it’s my time I will surrender gracefully.

 

[stmartinfan]

I recognize most medical professionals want to aggressively treat cancer regardless of the patient's age but it feels like it's also important to consider the toll the treatment is taking on the person. The stress of the appointments and tests seem like they are hard for you both. It’s difficult to make a decision about how long to continue but I know my family made the decision to let my mother live her last months in peace rather than try to treat her bone cancer after it was diagnosed when she was well into her 80s and had memory loss from strokes.

 

[Patri]

Maybe try the math approach? Figure how much the car costs vs Uber or Lyft. You can designate as a senior. You still have freedom, get dropped at the door, no hunting for parking. There are many pluses to letting the car and insurance costs go. I hope when it’s my time I will surrender gracefully.

Faith still has all her faculties and is young yet (relatively speaking like all of us). She shouldn’t cut off her independence to accommodate a man in decline.

 

[jorcus]

At the continuing care community where my parents live a doctor has been reporting a number of residents to the DMV for cognitive issues. Some have taken the news better than others. One woman asked my father for help reading the odometer so her daughter could sell the car. When he went down to read the odometer she had nothing to write the milage on. They walked back to the unit and my 93 year old father had memorized the number so she could write it down. I am in total awe of his faculties at that age. He did give up driving last year mostly because of slow reaction time with his feet.

 

[clifffaith]

Had the usual Saturday with Mexican Train in the afternoon, dinner with five friends, cards in the evening. He climbed into bed at 8:30, and I thought that was it for the night. NOPE. He was up at 9:30 to tell me he’s leaving Reata Glen today and divorcing me. Can I stop the DMV paperwork until he gets settled somewhere else? I can call Monday (not), Cliff, but it is possible that it was electronically transmitted. He went back to bed after an hour and every few minutes he’d open his eyes to accuse me of lying to the doctor about his driving skills. Ignored me when I tell him it’s his cognitive decline, not driving ability, that is the issue. Now you’ve done it, see what you’ve done went on periodically for another hour.

So obviously I had a second night of little sleep. Don’t know what today will bring. But he was dead serious last night, so I don’t expect it has blown over. Thought to hide the car, but decided not to. Contemplating taking the debit/ATM card out of his wallet (which generally he doesn’t use anyway) to safeguard the bank account and just leave him with a credit card. Heck I don’t think he could find a hotel on his own if he were to leave, let alone pack a bag that included a phone charger, tooth brush and plenty of Depends.

ETA he did drink 3/4 bottle of wine last night which I’m sure contributed to the late night ramblings.