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A MyParkinsonsTeam Member asked a question 💭
Lascassas, TN

My husband, who will eventually be my care partner, wants to "cross that bridge when we get to it", and I'd like him to know what might come before it comes.

August 23, 2022
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Answer Summary

Members rallied around the question of how to get a spouse to learn about Parkinson's disease before caregiving becomes urgent, with many... Read more

Members rallied around the question of how to get a spouse to learn about Parkinson's disease before caregiving becomes urgent, with many sharing that denial and avoidance are common responses rooted in love and fear. Several members suggested gentle strategies like leaving highlighted books out, sharing articles casually, forwarding podcasts, and using resources like the Davis Phinney Foundation's free printed and digital guides for patients and caregivers. A recurring theme was that honest, feelings-based communication works better than pressure, and that most partners do eventually step up when the time comes.

A MyParkinsonsTeam Member

This is just my opinion…….
You can’t make an adult learn something if they don’t want to. That being said, you can slip in some things into regular conversations that they would hear ( and then know ) passing along what you know as an interesting thought or idea. What I mean is something like, “ I read the other day that 40 percent of People living with PD will experience ( fill in the blank ) . And that it’s been proven that ( whatever ) helps most of them.”
Don’t know if that helps you, but I hop you get what I mean. Good luck! Joni

August 23, 2022
A MyParkinsonsTeam Member

Rascal have you told him how it makes you feel when he does. Not angry or hurt, but under those 2 words are your feelings that need to be communicated to him. Like when you don’t take the time to learn more about my PD I feel what? Could it be unimportant maybe also in this alone & you need him to stand with you & be willing to learn all he can do he will understand & be there to help & support you. Don’t minimize your feelings, own them & let him know.
Blessings
Carol
Scottsmom 🥰

August 26, 2022
A MyParkinsonsTeam Member

It’s certainly better to be prepared. My official diagnosis was three years ago, but like most I had early symptoms many years prior. I’m fortunate to be married to an RN who has become my full time caregiver.
Every single PD patient is different, so the wait and see plan may not work if you progress a bit faster than expected. Has the DBS allowed you to mostly live normally?
That’s wonderful if so. I’m Atypical in that I have no tremors but walking and balance are my major issues, I would read all you can about the importance of caregiver support, so one day if the DBS no longer effective your husband can be ready. It sounds as if he might be having trouble fully accepting your situation. It has taken me nearly three years to accept I’m only going to get worse..it’s a tough thing for all of us.

August 23, 2022
A MyParkinsonsTeam Member

I just found a group called the Davis Phinney Foundation. It's dedicated to Parkinsons. On the site you can order 2 free publications. One is general and the second is for caregivers. You can also download digital versions of the books. I ordered both (I'm the caregiver) and expect them in 3 weeks. Perhaps this might help for you and your husband. The link is below.
Denny
https://davisphinneyfoundation.org/every-victor...

September 6, 2022
A MyParkinsonsTeam Member

Rascal. It is evident that your husband is a good man and loves you very much, but he cannot know how you feel unless you think about how it makes you feel, besides anger and hurt. He won’t feel like you are blaming him if you take responsibility for your feelings and don’t start by saying “You” or “You Always” or “You Make Me Feel”, but instead Start with “WHEN YOU don’t let me know you won’t be home for dinner, “I FEEL”………what?….maybe disrespected and afraid that something happened to you, or whatever it is YOU are feeling & thinking. Starting with “YOU” blah blah blah he will get defensive, but when you take responsibility for how you feel and use ‘WHEN YOU’ he won’t feel like he has to defend himself. In reality, no one can MAKE us feel anything. We feel a certain way because of how you think, memories you have that it has triggered, your beliefs, for example: If a man doesn’t call and let his wife know he won’t be home for dinner means…..what? Maybe, He doesn’t care about me, He doesn’t respect me enough to call me, doesn’t care if I worry. These beliefs and messages we have learned through life like: “A man SHOULD call if he’s going to be late” or any others. These beliefs in your belief system including your memories and things maybe you learned from childhood about how something should be. These are the reasons for your feelings, the cause of feeling angry or whatever the feeling is. It is not the person it is your perception of what occurred and the belief systems built from childhood and life experiences. Another “NO NO WORD” is “SHOULD”. You should do so and so. You could say instead something like “ YOU MIGHT CONSIDER” do you hear the difference. You Should makes my neck hair stand out straight. Next time someone tells you YOU SHOULD……check your gut, how did you feel when they told you that. No one knows what you need to do in a situation. Personally I feel like someone is forcing their beliefs on me and I don’t like it. It has the power to CLOSE YOUR OPENNESS TO THE PERSON and BLOCKS COMMUNICATION That little child inside me says “You can’t tell me what to do” with her fist in the air.
I hope I explained this clearly. It really is huge in opening up communication and the person really understands and HEARS how you feel. And they don’t feel like they have to defend themselves or be told what they SHOULD or HAVE TO do.
Not trying to be a know it all. Just trying to share what I have been taught.
It really opened up communication between my husband and I.
Love and Blessings
Carol 😊
“ A word rightly spoken are like apples of gold”
(borrowed from scripture) Can’t recall right now if its in Proverbs or the Book of Wisdom.

August 28, 2022

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