My question goes out to both patients as well as family members and caregivers. In a unified way, what do most Alzheimer’s patients want? What is their primary want, objective, desire, as a whole and at each stage? Please give what you believe to be the answer, though I'm sure it's a little different for everyone. Please be as insightful as you'd like.

quote:

Originally posted by SomethinsABruin:
My question goes out to both patients as well as family members and caregivers. In a unified way, what do most Alzheimer’s patients want? What is their primary want, objective, desire, as a whole and at each stage? Please give what you believe to be the answer, though I'm sure it's a little different for everyone. Please be as insightful as you'd like.

As a person with Early Onset Alzheimer's Disease currently in the middle stages of the disease what I want most is patience, understanding and soft touches. Hugs are always welcomed as well as even sharing a tear or two here and there.

As I progress into the later stages where I become a stranger to this world, I don't really expect understanding as it is beyond the Caregiver's realm. But I do still expect patience and love and lots of hugs. Please don't shed tears for me because it will only cause confusion to a world that I no longer understand. You can share memories with me and look for that spark but don't be sad because deep inside I know you are a loved one. Just promise me that you won't leave me as if I never existed.

Tracy,

Thank you for your response. It helped me be more empathetic with my husband.

Kim

Tracy continues to astound. I should hope her audience in this forum is rather large and growing. You are giving us an insight into AD, Tracy. Mind you, in a coherent fashion as well. You are a courageous soul and that insight you provide is more than just helpful. Bless you!!

Let us do all we can while we can.Eventually we will need alot more help.I can still do most everything but the things I can't my Larry does for me............

I am a 55 year old man and was first told i had alz almost 4 years ago. Later it was defined as frontal lobe dementia so i am lucky. Coming to a place of acceptance and peace with my disease was far easier than the shock and ongoing battle with people who no longer see me a person but a patient.
Below is a short list of things you may want to think about if someone in your family has any form of dememia.
1. When you find out I have dementia please try to to refrain from spending the next 15 minutes explaining to me how you too lose your keys and cant find your car in a parking lot etc.. I understand it is merely a sympathetic gesture and your heart is good but, my disease takes away most of my patience and EVERY one the 50 folks in front of you in the last few years has told me the same story. What i hear is that you equate my daily loss of most of my reference points with normal forgetfullness and i assure you they are not the same.
2. When we talk please please dont start off with " SOOOO how are you feeling?" Tell me funny story. Tease me. Ask me advise on something i may still be able to give value on.
I will let you in on secret. My disease is not my real problem. I can not do a dang thing about the black holes in my life and i have accepted that. My biggest problem is YOU dont see me anymore. Yes i forget things. Yes sometimes i get very agitated. Yes i even get paranoid( another very interesting path to walk). So I ve lost my career. I understand. I ve lost the ability to travel across the world or even the town sometimes. I understand. There will come a day when i am a total vegatable. I have made my peace with that. BUT--- today im alive and you go off to school and work and live. I can no longer participate in your world or in what was my world for the most part. I am lonely. After spending days alone i dont want to discuss how im feeling i want you . bring some light and love into my cell. I need you to not put your hand on knee and give me sympathy but put it around me and hug me and tell me joke. Tell me im just as ugly as the day we met. Tell me your car engine sounds funny and we can try to visit about it( yes i know i dont find the right words to talk sometimes please be patient )
4 If you are ever with someone like me at the doctor's office or SS or such, please help me preserve what small amount of personal dignity i have. PLease dont answer for me even though it takes me while to make myself understood. PLease dont huddle with the doctor on other side of room and whisper. IM RIGHT THERE IN THE ROOM AND YOU ARE TALKING ABOUT ME. YOu can do that soon enough when im in full time care and can no longer find any words. Please allow me the short time i have left to be an adult human evan if I stumble some on the way.
4.By now i suppose ive ruffled a few feathers and im sorry for that but these things seem important and may be to others in my shoes. i will only throw out on last thing and then bite some lip and go get a snack and be done with it.
This is for husbands and wifes. I cant speak for woman as am a man but personally i bet it applys to both. If your spouse has any dementia i may NOT turn off his or her sexual desires. So if your demented spouse is no longer appealing to and you not longer desire him or her. LIe to them!!! Them em they were wild last night and fullfilled your every need. We realy cant remember and it will make us feel great all day.

Alphawave,

You are a very welcome addition to this forum A voice of reason and truth. Thank you so much for sharing from your perspective. I know (absolutely know) it will help many, many people to become better care givers. Again, thank you for your insights and your wisdom.


Tracy,

As usual, I remain in awe of you. Your determination to help and educate as many people as you can is....well, I can't even think of the right words to describe how awesome that is. You are incredible!


SnowyLynne,

Your response sums everything up so eloquently ..."Let me be who I am, for as long as I can".

I, like JackieO has posted before me, come to this section of the message board hoping to gain insights. Thank all of you so much for your willingness to share.

Cindy