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How can I tell others about my sister's Alzheimer's without making her uncomfortable?

Answered by Karen Garner

February 5, 2015

My sister is in Stage 6 and is no longer able to formulate coherent sentences. I always feel awkward when we’re introduced to new people and she starts in to an endless loop of nonsense. The confused expressions are often priceless, but I do feel like I need to clue them in right away. Do others have this concern? If yes, how do you mention the Alzheimer’s without making your loved one feel uncomfortable?

This is a wonderful question because this is something I am very adamant about! It is time for everyone to come out of the closet and be open and honest about dementia and Alzheimer’s Disease. There is nothing to be ashamed of. Go ahead and discuss it, educate others and let your loved one know that it is ok to tell people and they don’t need to be embarrassed. This is the only way the world will change and start accepting our loved ones and having more open dialogues about what changes need to be made to help everyone involved.

Remember back not too many years ago, cancer was whispered about and seldom discussed in the open. What a change in thinking and in return what a change in support and understanding patients have now. I think the only reason people are ashamed is because they have been taught they should be ashamed. With open discussions and dialogue, each time you and your sister explain her circumstances, you are educating and helping the greater cause.

Thoughts and stories from others

  1. February 12, 2015 at 02:14 pm
    Posted by KimberlysTravels

    I let moms doctors know ahead of appointments. Mom insists there's nothing wrong and sometimes she really does seem okay, but it does help, I've noticed medical staff are more patient when she's having a bad day.
  2. February 12, 2015 at 12:17 pm
    Posted by Karen Garner

    Good for you Laura. There may come a time that your Mom denies she has anything wrong with her and you may need to alter what you say, but thank you for sharing her diagnosis so that others can be informed. I believe one day we will be able to discuss Alzheimer's Disease just like we can cancer or diabetes….but for now, it is whispered like cancer was 30 years ago. It will take all of us working together to bring this disease to the public forefront.
  3. February 12, 2015 at 12:15 pm
    Posted by Karen Garner

    Susanna, you are right! Some dementia patients get upset when you talk about the disease with others or even claim they have it. You know your Mom best and must do what is best for your family and certainly for you Mom. Please see the other comments about small cards to hand out when you are in stores or restaurants to help others know they need to be a little patient and understanding with your Mom. I also strongly believe if the person doesn't mind sharing their diagnosis with others, it is important for them to be able to and to not feel any shame or stigma. I still have people whisper that my husband has Alzheimer's Disease to others when Jim isn't even around. If I hear them whisper, I tell them they don't have to whisper, it can be said out loud so that we can have a conversation about it and not feel as if anyone should be ashamed. Each family must decide what is best for them and I urge everyone who can speak about this awful disease to do so. Thank you for sharing your side and reminding us each patient is different.

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