2 Comments

An open conversation about dementia: Caregiver to Diagnosed

raised handI learn by asking questions. Those who have been in a classroom or worked with me will only reaffirm this statement. I have many questions I would like to ask my parents, but can’t.  Whether its respect or recognition that those I’m posing the question to don’t really understand what’s happening — my need to ask didn’t diminish.

Thankfully, I found Kate Swaffer. She liked the idea of starting a blog where we can ask each other the questions we would love to ask those around us.

If you have questions, please post them in the comments section and I will get them to Kate to respond.

Some of the questions I have posed to her include:

How were you diagnosed?

How has the dementia diagnosis changed your relationship with your husband?

What is the one thing care givers should do differently when trying to help their loved ones with dementia?

What, if anything, do you fear about your future?

Have you found any positive outcomes from your diagnosis?

Could you describe what “dementia” feels like?

My dad reads a lot, and I’m told that is his coping mechanism. Do you have some coping mechanisms? What are they?

Please join us in our conversation — The blog is called The Dementia Dialogue. Invited.

2 comments on “An open conversation about dementia: Caregiver to Diagnosed

  1. It’s surprising your moms’ doctors don’t see this sort of thing in their testing, but I can also understand not wanting to push for more tests. Sometimes you come to a point where “it is what it is.”

    I was really surprised to read that your mom wants to stay in the independent living apartment and have your dad move to the assisted living section, rather than her go with him. I mean, even if she doesn’t think she “needs” assistance….it’s not like it would hurt her to be in that section.

    I don’t comment often, because I read via RSS on my phone, but I do always read, and very much appreciate you sharing your journey.

    • My mom has been through both two neuro-psychological assessments in the past year — both resulting in a diagnosis of multifactorial or mixed dementia of which they suggested her thinking led them to believe one was Alzheimer’s. However, the MRI did not show signs of it — which may not mean anything. What was interesting was that my dad had the his own double testing and no one thought he showed any characteristics of Alzheimer’s and then he ends up with that diagnosis after the MRI.

      I am waiting to see how my mom’s thinking shapes over the coming days and weeks. On my last visit she brought it up and I told her that it would be much easier for Dad if they went together. She seems to be considering it. I think it’s best if they stay together. She didn’t realize that she had been eating dinner with a woman who has been in assisted living for the last 6 months. They chose this place 13 years ago but have been so resistant to accepting that the time has come that they need it.

      Thanks for your note.

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