Blog: More Tips from Early Stage Folks

If you read my last blog, you’ll remember that I promised to continue with the tips from those who have this disease.

Many caregivers have shared with me that they are disappointed in friends who do not call or stop by any longer, nor do they call to invite the couple out for an evening as they use to do. Caregivers are often surprised at the friends who DO continue to show up and might not have been considered “close friends” before the illness struck. How important is companionship to the person with dementia? In their own words:

“I need to get out and do things. I need to be social, I need to spend time with friends (I miss that).”

“I worry that I might have friends but they won’t come to see me”

“Email can be a way for me to connect with the world.”

“Laughter is important! If you are not having it, you need to!”

Furthermore, caregivers are not the only ones who get frustrated or impatient!

“I will let you know when I need a little space by giving you a kiss or a hug and telling you what you could do differently”

“I need time, a ‘time out.’

“I might try taking a walk, counting to ten, taking a deep breath…sometimes I might want to tell you to take a hike!”…

“I worry about getting angry, I worry about getting too angry, that it will get worse and I’ll start screaming”

“I need some independence – I don’t want to feel crowded”

‘I get angry and frustrated because of this disease.”

And words from those you love as my ending:

“Thank you for being sensitive and supportive of me with my Alzheimer’s disease.  I know that this is hard for you too, and I appreciate your understanding.”