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For those living with Alzheimer's: How can others support you when you've having a rough time?

Patty Day

What do you wish your caregivers understood when you are having a rough time? How can others help you?

Jaffy Member
hugs, let me pace, let me be alone when I want, light up every room I will be in, don't leave me alone when I don't want to be, don't ask me any questions!
1. Scott Matheny Moderator & Contributor
  Thank you for sharing these. What would help others understand these wishes? Can you communicate these to your caregivers? Scott Team member
Jaffy Member
I want my family & I to agree on hand signals for: leave me alone & stay near should be simple. I just have to remember to show them & them agree! Those are the times when I can't seem to communicate.
1. Jaffy Member
  I have only discussed it hubby, but with his own dementia = he does not approve = I am his Wife!!! Would it be better if he forgot that??? Our daughter will join this idea fine, it's just that I have to wait until she returns to herself, after the tornado. She can pretty well read me like I am a large neon sign, so rarely any problem. Our son doesn't want to talk about it or hear about it. The other 2 we rarely see. Well, we have 9 grandchildren & their 6! I never thought to talk to them! Can you think of other signals = my mind is all fogged up with getting glutened from my granddaughter hugging me. Celiac doesn't help my brain along with my gut!!! be How many of us could possibly be saner if gluten was removed from diet??? I really think it has helped me. (gluten is in cigarette paper) I don't smoke but get gluttoned in their homes or from their hugs. Hugging is a no-no but I want it especially when they want to hug me. Thanks. Jaffy
2. DonnaFA Community Admin
  Hi , I can understand your need and desire for non-verbal communication. I sometimes feel overwhelmed and don't want to speak. We do have a couple of articles that may be helpful in trying to explain to your family:
  https://alzheimersdisease.net/community-advocates/frances-mcinerney
  
  https://alzheimersdisease.net/living/nonverbal-communication
  
  I also wanted to include this one, just to support your decision to request this boundary for yourself:
  https://alzheimersdisease.net/living/creating-boundaries-to-thrive
  
  I hope those are helpful. - Warmly, Donna (Team ember)