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I knew. I have been lurking and researching on this website and matched behaviors. But of course the parents didn't see it coming.


So I am feeling like this is a diagnosis that isn't mine to tell our family members about. And our family isn't the best about keeping in touch. A previous death in the family a few years ago caused a rift.


Is my thinking right? I think they should decide who they want to tell, or not tell. Plus, I really don't want my parents bombarded with calls and questions. I am leaning towards telling one of my siblings who would be discreet. But not the other, she would take out an ad in the paper or post it on Instagram or something equally obnoxious.


Thank you in advance, I really appreciate your thoughts and responses.


Sparkles

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Hi sparkles87
Who has the dementia? You? Your partner? Your parent/s/

Not that it matters at the moment. I am honoured that you shared it with us.
This is a fantastic site to come to and ask questions, rant, comment etc. WITHOUT being judged.
Remember, as long as you hurt no-one, all your choices are correct, because YOU made them.

Prioritise. You first (you can help no-one if you are unwell)
Who would you like to tell?
Who can you tell? (not the same thing)
Will you tell a few - just to get it out of the way early?

Take a little while to think about all of your options.
Do you have a Minister, or a good friend you can discuss this with?

Let us know how you get on please.

Good Luck and take care
Buzzy
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Buzzy -
Thank you for your reply!
Oopsie! I should have said who! My Mom was just diagnosed with dementia.
I have talked to a few very close friends, who have been / or are currently caring for their parents. But none have a parent with dementia. Which is why I wanted to reach out here.
Thanks again!
Sparkles
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I’m not certain who you mean by “they”, but I think you’re right. Unless it’s your own personal diagnoses, in which case it’s up to you to share the information or not. “They” should share the diagnoses or any other personal thing when and to whom they choose. Then, let the chips fall where they may. They can also choose to answer their phone, or not. If it’s a good friend, talking it out may help. If it’s the sister with the public broadcasting issues, I’m sure they’ve dealt with these issues with her before. You may be surprised by the alienated family members. We have the same issues. He has 2 sisters and one living brother. My husband is not well and they know it. None of them has called or emailed in more than a year. At the last family gathering, which I attended alone, no one even asked about him. When my son, who stays in touch with his cousin told me two of them had planned to visit, I told him to tell his cousin they aren’t welcome in my home.

Support “them”, but it’s their choice to make.
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sparkles87 Sep 2018
Ahmijoy -
Thank you for your reply!
"They" would be my parents.
I appreciate you sharing your experience. I always like reading your answers.
Sparkles
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Yes, your parents need to decide who and when to tell. But I think it's your role to encourage them to tell your siblings (both of them) soon. Your parents will need a lot of support as time passes, and you will need a lot of people on your support team. It is not unreasonable for your folks to tell your chatterbox sister that they are sharing this in confidence and ask that she respect their wishes to share their own news at their own pace.

I can relate to your question because my mom had a terminal brain disease that caused extremely rapid dementia. My dad was very reluctant to share that anything was wrong with anyone other than my sister and me until we had a definite diagnosis. It took 3 months of Dr. visits and tests to rule out other possibilities.

Once we knew what we were dealing with for certain, I told my dad that his siblings and Mom's brother needed to know because they loved her and had already expressed concern for her obvious decline they had observed. I offered to make those phone calls for him. He was grateful for the help in letting extended family know, as it relieved him of the burden of explaining this devastating news over and over.

In your situation, it might be good to let them know that you acknowledge that this isn't really your news to share, but that you are happy to help them share it with the people with whom they want to share it. Whether you think your chatterbox sister should be trusted with the news or not trusted because she will blab, she still needs to know that her mother is ill. Let me re-iterate: you are going to need a lot of people on your support team, including BOTH of your siblings.
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sparkles87 Sep 2018
Thank you so much for your reply, and I especially thank you for sharing your own experience! You have given me some great ideas, I will make a plan to talk to Dad.
Thanks again, I appreciate you!
Sparkles
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I have an update -
I talked with dad, and told him that they needed to decide who they want to tell about the diagnosis. So far, they haven't told anyone, which is fine. It is their choice.
My good news is that this was the catalyst, and they are FINALLY allowing me to help them. Rather cheerfully even! =) I know I can't do everything, I'm only human and a not very healthy human at that. We are going to convert a few rooms in their house to a small apartment for me. That way, I'm closer(I'm currently down the street) and can help easier, but have some space and privacy.
So now the big project of clearing out junk and cleaning things is underway. One day at a time, and one room at a time (so I keep telling myself).
Thanks for listening -
Sparkles ✨
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I know this original post is a month old, but it showed up on my feed today.

I faced a similar issue this past week. My stepdad has been hospitalized and Mum had only told his daughter and me. I called two of Mum’s oldest friends once he had been in for two days and it still had not been determined what is wrong.

In this case it was the right thing to do. Mrs. R called and had Mum over for dinner. Mrs. K and Mum belong to a service club and she has let the people who can help Mum out know the situation.

I also emailed my brother and sil, my sil is a Doctor and can speak the same language the medical staff at the hospital. Her phone calls have been a huge help.

Now, although I did not ask Mum before making the above calls, I know it is what she would have wanted. She needs the support, but is so overwhelmed that for her to make one more phone call and explain is just too much.
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