轉傳分享:失智症者的願望清單(Wish Lists)
我美國的同事,今年85歲,沒有失智症,但收集了這份失智症的願望清單(Wish Lists)。他是印度人,第一代來美國。他把所有兄弟姊妹與父母都接來美國。整個家族已經超過一百多人在美國。家族裏有非常多的醫生,他們也常有討論。
我讓ChatGPT 把他的這份願望清單翻譯成中文,便利大家參考。如果你很忙,只要看完1a那句話,就值回你的時間。
【失智的人的願望淸單】
如果我得了失智症,我希望我的家人能把這份願望清單掛在我住的地方的牆上。我希望他們能記得這些事情。
1a. 每次你走進房間時,請先介紹自己。例如:「嗨,爸爸——我是 Sujatha(蘇賈莎)、Raj(拉傑)或 Shalini(莎莉妮)。」
千萬不要問:「你知道我是誰嗎?」 那樣會讓我感到焦慮。
1. 如果我得了失智症,我希望我的朋友和家人能接納我所感受到的現實。
2. 如果我認為我的配偶還在世,或者我以為我們正要去哥哥 Chitti 家吃晚餐,請讓我相信這些事。這樣我會開心得多。
3. 如果我得了失智症,請不要和我爭論你所認為的事實和我所相信的事實有什麼不同。
4. 如果我得了失智症,而我認不出你是誰,請不要往心裡去。我的時間感是混亂的。
5. 如果我得了失智症,已經不會使用餐具,請不要馬上餵我吃飯。請試著讓我改成「手指食物飲食」(“finger-food diet” 用手拿食物吃 ),看我是否還能自己進食。我習慣這樣,那是我童年時的方式。
6. 如果我得了失智症,感到悲傷或焦慮,請握著我的手並傾聽。不要告訴我這些情緒是沒有道理的。
7. 如果我得了失智症,我不想被當作小孩對待。請像對待成年人一樣與我說話。
8. 如果我得了失智症,我仍然希望能享受我一直喜愛的事物。請幫助我找到方式去運動、閱讀、與家人朋友見面。
9. 如果我得了失智症,請邀請我說一段過去的故事給你聽。
10. 如果我得了失智症,出現激動或焦躁的情緒,請花時間找出我不安的原因。
11. 如果我得了失智症,請用你希望被對待的方式來對待我。
12. 如果我得了失智症,請確保家裡常備零食。即使是現在,我若沒吃東西會發脾氣;若我有失智症,可能無法表達我需要什麼。
13. 如果我得了失智症,請不要當著我的面談論我,就好像我不在房間裡一樣。
14. 如果我得了失智症,而你無法每天24小時、一週7天照顧我,請不要自責。這不是你的錯,你已經盡力了。請找人幫忙,或替我選一個好的照護場所,那或許可以稱為「天堂」。
15. 如果我得了失智症,住進失智照護機構,請常常來探望我。
16. 如果我得了失智症,把人名、事件或地點搞混了,請不要表現出煩躁。請深呼吸。這不是我的錯。
17. 如果我得了失智症,請確保我隨時能聽到我喜歡的音樂,也請確保我有戴助聽器。我喜歡「提亞加拉賈的克爾坦歌曲」和「甘塔沙拉的宗教詠唱」。
18. 如果我得了失智症,喜歡撿起物品帶來帶去,請幫我把那些東西放回原處。我不是小偷,請不要這樣對待我。
19. 如果我得了失智症,請不要把我排除在派對和家庭聚會之外。我一生都喜歡那樣的時光。
20. 如果我得了失智症,請記得我仍然喜歡擁抱或握手。
21. 如果我得了失智症,請記得我依然是你所熟悉與愛著的那個人。
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可轉貼分享這段文字,紀念你所認識或曾經認識、罹患失智症的人。也獻給所有正在與失智症或阿茲海默症奮戰的親友們。
六月是阿茲海默症關懷月——當這個疾病出現在你家人身上時,你會比任何時候都更深刻地意識到它的存在!
English version.
If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.
1a. Every time you enter the room announce yourself. “Hi Dad- it’s Sujatha or Raj or Shalini.”
NEVER ask- Do you know who I am??? That causes anxiety.
1. If I get dementia, I want my friends and family to embrace my reality.
2. If I think my spouse is still alive, or if I think we’re visiting my Brother, Chitti for dinner, let me believe those things. I’ll be much happier for it.
3. If I get dementia, don’t argue with me about what is true for me versus what is true for you.
4. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
5. If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself. I am used to it. That is what I did at my childhood.
6. If I get dementia, and I lam sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
7. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
8. 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 my family and friends.
9. If I get dementia, ask me to tell you a story from my past.
10. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
11. If I get dementia, treat me the way that you would want to be treated.
12. 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.
13. If I get dementia, don’t talk about me as if I’m not in the room.
14. 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, that may be what is called “Heaven”.
15. If I get dementia, and I live in a dementia care community, please visit me often.
16. 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.
17. If I get dementia, make sure I always have my favorite music playing within earshot, make sure I have hearing aids. I like “Thyagaraja kirtanas, and Ghantasala’s religious renderings.
18. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place. I am not a thief and do not treat me like one.
19. If I get dementia, don’t exclude me from parties and family gatherings. I loved them all my life.
20. If I get dementia, know that I still like receiving hugs or handshakes.
21. If I get dementia, remember that I am still the person you know and love.”
ᴄᴏᴘʏ ᴀɴᴅ ᴘᴀsᴛᴇ in Honor of someone you know or knew who has dementia. In Honor of all those I know and love and lost who are fighting Dementia/Alzheimer’s.
June is Alzheimer’s Awareness Month…you’re never more aware than when this disease hits your family!