Dear Mellisa I am sorry for the hard time your going through right now . When it comes to end of life requests , I am sure it is still hard to carry them through , you end up second guessing everything concerned for the person you love . You have to just do the best you can ; make the best decisions you can . Keeping in mind that persons wishes , if , they have remained unchanged . What if you donot know if those wishes made in the 1980s have changed , if the person can no longer express themselves . I think you do your best thinking and still consider that earlier "wish" . My heart goes out to you , your going through a real emotional time . Sometimes there is no right or wrong answer to a situation ; just a decision made with your best interest for that loved one , whose body is betraying , the person deep inside . I hope each day you have the strengh to cope . All my best. db

I do have an update today. But first, I'm not really an Okie. Just a transplant. I was born and spent my first 19 years in Illinois. Then I spent the next 7 in Nebraska. I've only been down here 14 months. My inlaws are from this area.

Spoke with my grandmother. Mom is down to just under 80 lbs. She ate 5 bites of food this weekend and drank like a fish yesterday. The medical personnel that think they know say that mom could last a long time even if she only takes a couple bites here and there. Don't ask me. I don't talk much to the people at the home because I end up losing my temper. I just thought I'd tell you that they officially weighed her. She has lost 30 lbs, or close thereto. But she was rather vivid with her eye movement yesterday. She seemed very awake.

Thank you to everyone here. You have all been so nice to me. After all these years of searching I have finally found people who know what HD is like. It really means the world to me. Makes me feel like I am not going through this alone.

Love,

Melissa

Hello all,

Sorry it took me so long to reply. I lost all my bookmarks in a computer crash, and my back up files and it's taken me a while to get everything else up and running. Thanks to Jean and Marshap for sending me notes of encouragement. You are right, it's time for an update....

Mom has lost 32 pounds since September. Most of it since February. She seems to be tired all the time, and she eats sporatically...it really depends on her mood. Otherwise she is still same old same old. Her doc told my aunt that all she has to do is eat one meal a week and that could make her last a long time.

Then her sister died yesterday. My aunt went to tell her and she showed no recognition of my aunt even being there. Sometimes she is very alert when she has a visitor. She's coherent, and uses her eyes, half of her face, and her one hand to communicate.....other times, she doesn't even notice you are there.

I still plan on going home to IL in September unless something else happens. I talked to a cuople former school chums of mine and they are still planning the class reunion for this year...they both were amazed that dad died first and mom was still going!!

Until later friends.....

Melissa

Hi Melissa,
My father in law passed away a month ago.He would have his bad weeks where he would get worse but he would be like that for a long time.
He had 2 strokes the week before he died,then was choking on water.Its a hard decision but his wife didnt want a feeding tube & he wouldnt of wanted that either.He is now in peace with no pain.

I am thinking of but Im sure you will make the right decisions.

Take care
Julie

Hi Melissa,

The best we can do is supply comfort at the end and company. I am sure you are doing both which is all any of us can ask for. Sometimes there is a lot to say and sometimes not. Hope you are holding up.

I'm doing okay...

But sometimes, it's hard to imagine that mom just has no clue there're people in the room with her. It's weird. She's never been like that before. So sometimes she is completely there, and sometimes not. It's hard to tell. She had 2 visitors last week that took her outside and wheeled her around the flowers for 2 hours and she was awake, with it and communicating through eye movement and half-smiles. I'll see more when I get there.

~M~

I think a lot of times you can not trust reading their face as judgment of what they hear or understand. I know there have been days T(Teresa) is non communicative and her face is blank. I have to monologue those days. The following day she will ask about what I said. I had no idea if she heard a word I said or cared. Now I assume she hears everything even if her face doesn't give it away. My advice is don't assume she is not there even if it seems that way. Don't talk about her in front of other people if it something that may hurt her feelings either. Sometimes they have bad face days... and stuff just doesn't show... pretty sure. And they do feel happy or sad on the inside. It's in my case not wishful thinking...I assumed the same thing at first too 'til she proved me wrong several times.

I once had an older friend who was in the NH and at end stages of life . I always acted by my words and actions , as if he knew everything that was going on . I told him how special him and his wife had been to our family and how his good example was an inspiration to all of us . I told him how I appreciated how good he had been to my youngest son . I recalled stories about all the fun times . I told him not to worry about his wife all of us , all of his friends would take care of her . He could not communicate in anyway ; just lay there . But I felt he heard me . I have done that with others we knew . Sometimes I read to them , something encouraging . Mellisa I am sorry your Mom is not well . All my best thoughts. db

My prayers are with you.....it must be so difficult for you.
Sandy

I can't add much but I am 33 and have Huntington's chorea and don't eat much. I could care less if I talk either. Meanwhile I can still write and be active communicating that way, don't get me wrong I will talk but hate it as I have nothing verbal to say.

It's an embarrassing thing to go through. Mine is progressing early and I know that.I talk with my husband and family, but hate the thoughts of talking to people other than my close network of friends and family. I had pneumonia once this year and won the battle. The only reason I come here is to see more people like me to relate to. I have 2 caregivers, my husband and Mother. Without them I'd go crazy.

They read this board to find caregiving hints and help. My message to you is not to give up hope, as I have made it through so much stress...the good Lord wants me around to help others I do believe.
Hugs to you,
eudell

I never speak about my mom to other people in front of her...ever, ever. Sometimes, I just wonder if she's in there...or off in her own place. Most of the time, my emotions are tied up as I can only physically see her once a year. But I call her caregivers 3 times a week checking up on everything.

The only thing that I feel I cannot stress enough to caregivers out there is to make sure you have an outlet and not allow yourself to be overstressed to where it can break you. I was 16 years old when I had a heart attack and then open heart surgery. I was pulling mom in and out of bed and the tub, up and down stairs, all the feeding and meds. It was just too much. 7 years ago, my father had what mom's neuro-doc called caregiver's heart attack. He was in a coma for 3 days before he finally let go. I firmly believe he heard everything that was said in that room. I hold out the same hope for mom.

Thanks again all.

~M~

Melissa, I have no words of wisdom, I just want you to know that you and your family are in my thoughts and I wish the best for you. Take care, Hugz,
Trish