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16 Things I Would Want If I Got Dementia

Brooke Phillips, CWCMS
Editor | Shield HealthCare
06/02/16  9:38 AM PST
If I get dementia Si tengo demencia personas con demencia

Original article by Rachael Wonderlin, Director of Memory Care at Blue Harbor Senior Living.

A heartfelt wish list from a dementia care worker

(Part of the Transforming Life As We Age Special Report)

When you work in dementia care, people tend to ask you a lot of questions. Probably one of the most common questions that I hear is, “Are you afraid to get dementia when you’re older?”

Honestly, there are many things that scare me much more than dementia does. Don’t get me wrong: dementia is a terrible group of diseases. I’ve been fortunate, however, to see many of the beautiful moments that people with dementia can experience.

Just in case I do get dementia, I’ve written a list of 16 rules I’d like to live by.

If I get dementia, I’d like my family to hang this wish list up on the wall where I live:

Rules for a Good Life

– If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.

– If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.

– If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read and visit with friends.

– If I get dementia, ask me to tell you a story from my past.

– If I get dementia, and I become agitated, take the time to figure out what is bothering me.

– If I get dementia, treat me the way that you would want to be treated.

– If I get dementia, make sure that there are plenty of snacks for me in the house. Even now, if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.

– If I get dementia, don’t talk about me as if I’m not in the room.

– If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.

– If I get dementia, and I live in a dementia care community, please visit me often.

– If I get dementia, don’t act frustrated if I mix up names, events or places. Take a deep breath. It’s not my fault.

– If I get dementia, make sure I always have my favorite music playing within earshot.

– If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.

– If I get dementia, don’t exclude me from parties and family gatherings.

– If I get dementia, know that I still like receiving hugs or handshakes.

– If I get dementia, remember that I am still the person you know and love.

 

This article previously appeared on Nextavenue.org and AlzheimersReadingRoom.com.

Comments

5 Comments

  1. Alice
    Posted June 10, 2016 at 8:32 am PDT

    That list is beautiful and I would want that also, if it were to come my way.

  2. Maria
    Posted June 10, 2016 at 6:04 pm PDT

    Thank you for the reminders! My mama has Dementia and I needed to be reminded. I am a very good daughter. Mama is the Queen of my heart and always will be. ❤

  3. Posted July 19, 2016 at 9:59 am PDT

    Beautiful share,i love your list for a life of a dementia individual,my mother in-law is at beginning stages of this horrible disease,but by the grace of God I’ve had experience in this field, my challenge is trying to get the family members to understand and abide,in this journey and the course of it ,and following through,lol they are my difficulties,them not understanding that she’s still mom,we jus have to be creative whet now,shes jus more colorful,i say,thank you Kathy Lifting,may your journey as caregiver continue to be a blessing to many,God Bless,sincerely,Tere Williams -Hicks

  4. Nancy
    Posted July 21, 2016 at 5:13 pm PDT

    Thank you for printing this article. I am going to send it to my son. I am sure he would find it to be a comfort if I should get one of these diseases.

  5. Mimi
    Posted August 17, 2016 at 11:26 pm PDT

    Hi, I am only 59 years old. I turn 60 in October. I have the starting of Dementia. I am scared. I already have been battling with Fibromyalgia. Then about 5 years ago I have the starting of Macular Degeneration (dry). I just found out I have a body old an elderly person. I have low blood flow going to my brain. God must think I am strong and can handle a lot. But I don’t want my family have to take care of me. I hope it doesn’t get worst quickly. I am going to print the list. Because I feel the same way. Thank you

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