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9 comforting things a dementia carer dreams of

9 comforting things a dementia carer dreams of

by MARA BOTONIS
Contributor

“Don’t keep telling me about the latest miracle cure” among this great list of 9 ways to comfort caregivers.

Think of it as a mantra, a poem, a serenity prayer.

Send to your friends. They want to help … they just don’t know how. Everyone is babystepping in this growing silver tsunami.

Even for those buddies who are swamped, there will be one thing on this actionable list they can absorb or do. Good karma all around.

9 Ways to Comfort

  1. A small gesture goes a long, long way. The gifts that matter most are the ones that help me save time and energy and are a treat that I can enjoy at home without arranging care. I don’t always have time to read a book or watch a movie, or take advantage of invites to restaurant meals or spa treatments, but these are things that I can and will enjoy. Dropping off a pre-made dinner, a CD with my favorite songs, a favorite dessert or snack, a photo album you made of pictures of us over the years, a soft cuddly blanket, fresh flowers or a selection of teas and coffees would be so welcome.
  2. Please don’t make me feel guilty. I’m sorry I may be missing family gatherings, not remembering important events or not calling as often as I used to. Please try to understand my whole world is turned upside down right now.
  3. Write me a note or an email. I can’t always talk on the phone or devote the time to an in-person visit. The times during the day when I’m “free” to socialize are usually only the hours when my loved one is sleeping and, even then, I keep watchful eyes and listening ears tuned into what’s going on around me. If you write to me, I can read it when I have time to truly enjoy it.
  4. Be patient with me when we do connect. It may seem like I’m tired, cranky, consumed by everything Alzheimer’s- and dementia-related and almost incapable of summoning the social graces to make “small talk.” Just know that I care about you, I miss you, and I’m very interested in your life. I’m just really wiped out right now. As hard as this is for me, I wouldn’t change it. Love is about being there for the other person, especially when they need you most.
  5. Reminisce with me. I willingly, loving and without hesitation put another person first for most parts of my every day. Sometimes I feel like big parts of me get “lost.” Please remind me of a time before Alzheimer’s and dementia entered our lives. You may be the only one in my life that I get to do this with.
  6. If you think I’m doing a good job, please tell me. Most days I feel like I’m failing, trying to fight an incurable disease and the only witness to my efforts is often unable to let me know if I’m doing anything right.
  7. Please don’t keep telling me about the latest miracle cure, research study or scientific article. I hate this disease as well, but right now, my focus is on the person I love that is currently living with it, not those in the future that may be positively impacted by these efforts decades from now.
  8. You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes, and I’m here every day. We’ll get through this, you and I, together.
  9. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying.

 

©2014, “When Caring Takes Courage.”

When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer's and Dementia Caregivers

Mara’s passion and life’s work has been to learn the best practices which capable caregivers (both professional and family member) use to find success, joy and hope in the face of this devastating disease and find a way to share that information with those who deal with dementia on a day-to-day basis. She is the 2015 Jefferson Award Recipient: Outstanding Public Service, and the 2015 Jacqueline Kennedy Onassis Award Recipient: Outstanding Public Service on Behalf of and Throughout the United States. She continues to be an active speaker and advocate for those impacted by dementia worldwide. Learn more about her work at: www.whencaringtakescourage.com.


About the author

Mara Botonis

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