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How does sharing diagnosis of Alzheimer's affect patient?
Caregivers: Dementia | Last Active: Oct 9 10:08pm | Replies (31)Comment receiving replies
I agree with that sharing the Alzheimers diagnosis depends on the individual and the circumstances. My husband was diagnosed with moderate cognitive impairment a year ago, and Alzheimers after a spinal tap this fall. He is now beginning treatment with the new therapy called Leqemba. He is fully aware of his disease, after having met with a neuropsychologist and now being treated by a neurologist. We have shared his diagnosis and ongoing developments with our adult children, and he agreed that it was OK for me to share the diagnosis with close, nearby friends because I need their support to cope with some of his symptoms. However, he hasn't personally shared his diagnosis with his other family members or his friends. I don't think it's my place to do that, but I think he should soon because his symptoms are becoming much more obvious. Also, others sometimes question me about what's going on with him. I'm never quite sure what to say, except something like he has some health issues that are stressing him out. I'd appreciate any comments about how to handle this situation.
Replies to "I agree with that sharing the Alzheimers diagnosis depends on the individual and the circumstances. My..."
I think it depends on who is asking me about my husband’s Dementia. His older son, whom we rarely see, questioned whether his Dad even had Dementia, so I sent him the results of the 2 hour test results.
My husband has always been quiet but it is his speech that is noticeable now. Sometimes he can’t complete a sentence and slurs his words. This happened just the other day and his sister, who we rarely see, kept giving me looks as if she was aware that he wasn’t himself. But she hasn’t asked any questions about why, so I am assuming she knows.
It is obvious to most who know him that he isn’t the same, but unless they ask me outright what the problem is, I assume they know why. Some people are aware that something isn’t right while others just go along their merry way or just aren’t interested.
The only objection my husband has about telling anyone about his Dementia is a shirt I bought that says “My loved one has Dementia” and he asked if those words were about him. I felt very bad that he felt so exposed by my wearing this shirt that I will not wear it again. It never even occurred to me that he would be bothered by the words. Another lesson learned.
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@ret2tus, I wanted to address your question about how and when to tell others, when your husband can't or doesn't.
You might find the tips shared by Mayo Clinic experts helpful:
- Maintaining Friendships https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/maintaining-friendships/
- Should I Tell My Family About My MCI? https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/should-i-tell-my-family-about-my-mci/
- Who Else Besides Family Should I Tell About My MCI? https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/who-else-besides-family-should-i-tell-about-my-mci/
- Discussing MCI with children https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/discussing-mci-with-children/
Obviously, you have good communication and shared understanding of who you agreed to tell, but what about the people who haven't been told and symptoms are becoming apparent. That gets stickier, right. You want to respect his control to share when he wants and is ready, but I'm sure you also see that some situations may be eased if the other person had some insight. Am I getting that right?