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What's My Line?

Wow. I can’t believe that this is already the 5th Q&A column I've posted.

Your questions! You are all so thoughtful, and so involved with the loved ones with PD that you’re caring for. I’m repeatedly impressed!


This week’s questions


Q. Dear Terri

How to answer when your loved one asks if you think they are "progressing fast"?


Signed,

Wish I could take the Fifth


A.    Dear Wish/Fifth

What a hard thing to have to think about. If the answer were easy:  “Oh, no love, you are actually getting better,” you wouldn’t need help to think of what to say.


And despite the value of the therapeutic fib (which will be the topic of a different email) I don’t think this is the time for that.


But I think there is a way to answer that responds to your loved one’s “question beneath the question.” It’s something I learned from my friends who are therapists (and truth be told, from my own therapist too,). 


You could respond “Well, I’m not sure. How does it seem to you?”


This answer gives your PWP a way to begin talking to you about what is on their mind in a deeper way. What they notice. What they are worrying about.


And if your PWP instead responds by saying “I asked you first,” then I think you can be gentle, and honest, and specific.


“Well, I’m not sure what “fast” would be.  Here is something I’ve noticed lately. . . Is that what you’re thinking about?”


The point is not just to give a yes or no answer. But to begin a real conversation, however brief, that strengthens the connection between you.  You can talk about PD, symptoms, changes, worries, plans, whatever is on your PWP’s mind, and what’s on your mind too.


As you know PD can alter the nature of your relationship with the PWP.  But conversations like what I’ve described here can help you gradually reshape and restore the connection between you.


Hugs x 4,

Terri.



Q. Dear Terri,

Should I feel guilty about disconnecting as my husband’s personality changes?

 

Signed

Should I let go?

 

Q. Dear Should I let go,

Another tough question here.  This one starts with the recognition that PD  brings brain changes to our loved ones.  Anosognosia, which came up in an earlier column,  makes PWPs unaware of the way that they are different.  And the changes to empathy, impulse control and other brain functions make our PWPs seem like they are becoming entirely different people.


When you ask about “disconnecting,”  I think it’s important to recognize even if you worked your very hardest to remain just the same as you have always been to your husband, he is not the same.  So you cannot remain connected in the same way. 


Each PWP’s brain responds to dopamine loss in its own individual way.  So your husband may be less sensitive to your needs. Or he may stop caring about responsibilities that had always been his.  Perhaps he is spending money in ways that are new, or experiencing a major surge in impulsive behavior in sexuality, spending, or gambling. He may be more dependent and need more of your time and attention. He may not express interest in things that you tell him, or he may be acting in ways that seem deeply selfish.


So may I reword your thoughts a little? I suggest that as PD changes your PWP, you’ll inevitably find yourself becoming disconnected from the husband-that-was.  What remains is for you to see how you can be a loving self—a self that still feels like you--as you make new connections with the ever-changing husband-as-he-is right now.   I think that there is no way be connected in the same familiar way.  And your job is to discover, and to decide, how you connect with him as he changes. 


It’s simply a reality, I believe, that as your loved one with PD changes, you’ll adapt and adjust.  No guilt is needed.  Instead, use your capacity for love, for empathy and for closeness to figure out how to meet this changed person as he is, and to sustain a connection that you and he can value in each present moment.


Remember, both you and your PWP will be changed by PD.  The big difference that I see is that we caregivers know that some kind of changes are coming, and we can make conscious and informed decisions about how we respond.


PD doesn’t let you decide much, but you do get to decide this—how to love this person whose brain is breaking.  You may move closer. You may step back, or even disconnect entirely. You’re not guilty unless you make changes and choices that you, yourself, do not approve of.  And if you find yourself making changes you don’t like – you can fix that. That’s a job that therapists can help with.


Hugs x 4,

Terri


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