Don't Know/Don't Care

Hello there! It’s Friday again.

And today we have two questions that reflect the relationship struggles that so many carers –care partners and caregivers—write about.

They are the aspects of PD brain changes that boil down into “I don’t know, and I don’t care.” 

Or, what the brain scientists call unawareness of deficit, and apathy. And it's taking a little bit of brain science to answer, so this is a long long post. 

Let’s jump right i

Q. Dear Terri,

 My husband has had PD for several years.  And these days he is just so stubborn. He’s had three scary falls in the last week.  He’s got a walker. He knows how to use it. And he just doesn’t.  And the worst thing is that even though he’s got a black eye and a bruised arm, he tells me he doesn’t need help and can get up just fine.

Well, I can’t tell if it it’s male pride, or what. But I am so scared that his next fall will be even worse.  I’ve even shown him a video of his walking to let him see how unsteady he is. How can I get him to agree that he just doesn’t have good balance anymore?

Signed,

Holding him up  

A. Dear Holding Him Up,

It sounds like you’re experiencing the first part of the Don’t know, Don’t care–pattern in Parkinson’s. That’s where the brain changes interfere with our loved one’s ability to pay attention to the changes in themselves and the importance of various events around them.

The official name for what you’re describing here is anosognosia. It means unawareness of deficit, or not being able to tell that something is changed.

With anosognosia there are changes in parts of the PD brain. They interfere with a person’s ability to recognize how he or she is carrying out some everyday task. They don't compare what they are doing with how things normally should be. Anosognosia can look like a stubborn insistence that nothing has changed, and that they don’t need help with standing up safely, or walking, or handling power tools, or driving.

All of these things are pretty scary. And we care partners and caregivers tend to work overtime to persuade the PWP that things have changed.  But, that just doesn’t work.

Here’s what I suggest.

Instead of trying to persuade the person that their abilities have changed, think about saying something like this.

“Well yes. You probably could still drive. But I’m just feeling worried about it, and the doctor told me that I should try driving for a while. So just for today, help me feel better and let me drive.”

This approach does a couple of things.

First – You are not asking your PWP to agree that they have lost an important ability.

Second – You are saying that if your PWP agrees to have you take over the task your PWP they are making you feel better.

Third – you are not saying it is a permanent change, even though you know that it will be.

In fact, you cannot be sure that you will be able to immediately get your PWP to remember to use the walker, or relinquish the car keys. But start this pattern soon. Start before it’s really needed, so that you just shift things to keep them safer, without wounding their pride more than necessary.

I’ll send you your hugs.

Four hugs for you,

Terri

Q.  Dear Terri,

I’ve tried so hard to be a good and loving partner to my PWP. We’ve been married for 43 years and I do everything I can for her.  I love her, and I will be with her for the long haul. And yet the more I do, the less she seems to notice or appreciate how hard I am working.

She’s had Parkinson’s for 5 years-at least that when she was diagnosed.  And she seems not to care about staying active or helping me with anything.  The house is a mess and all she does it sit in front of the TV.  Terri, I need her to help! Or at least to exercise a bit. How can I shake her out of this apathy?  Is she depressed?  What can I do?

Signed,

See me.  Please!

A.    Dear SMP

Oh yes. There is more and more you’re doing to care for your PWP. 

And it sure seems that she CAN do a lot of things, but just won’t.

You’ve probably asked her, more times than you can count. Remember to feed the dog, take out the trash, or put your worn laundry in the hamper.  And when you remind her or put up signs to do the nagging for you, or, as a last resort cry, or yell, or just refuse to do these things, there is still no change.

I wouldn’t be surprised if you want to try the Loretta/Cher-solution from the movie, Moonstruck. A quick “Snap Out of It” that would change everything.

Once you know that apathy is a Parkinson’s-related brain process gone awry, that might reduce your feeling ignored or unimportant. 

Apathy is a common aspect of PD. It sometimes shows up before other symptoms, leaving us feeling that our partners have stopped caring for no good reason.

The fact is that Parkinson’s interferes with the chain that I think of as “Notice-Care-Act.”  Those are the steps that take us from a whining Labrador at your feet to a satisfied pup sleeping by your chair.  

That chain is just broken.

 Unfortunately, the brain changes of PD are so complex and so variable that I can’t tell you whether your PWP has lost the ability to Notice. Or the ability to Care. Or the ability to Act. But all three of these are aspects of Parkinson’s Apathy and they all can drive a carer to her knees.

So what do you do? 

It might help to get a bit scientific.  Depending on whether it is Can't Notice, or Can't Care, or Can’t Act, you may find that filling in for the missing brain circuit helps.

If it’s Can’t Notice, cue the PWP that it’s time to take action. “Look at Buster. He’s begging for food.” 

If it’s Can’t Care, give them direct instruction (without waiting for them to know that it is important).  “Darlene, feed the dog now, please.”

If it’s Can’t Act, help them take action. “Come on, let’s get out the food and the bowl, I’ll help you.”

Or, you may decide that this is an action that you will assign to someone else. Assuming that there are others around in your life, or to take on as one more thing that is now in your hands.

Yes, that’s going on. It’s another aspect of the disease, and it does not reflect a failure on your part.

And now that you know that your partner either Can’t Notice, or Can’t Care, or Can’t Act, you can start to reduce your expectations and start to make adjustments.

I wish I had better news for you, SMP. But with luck, this information will help you find a new direction in reshaping your household and your life to accommodate the changes of PD.

You need the hugs, for sure.

I’m sending you four.

Terri