Yesterday I went to an 80th birthday party. To see this man function like he was 60 was amazing. I was talking to some people & then a women joined whos mom has this disease. She started saying how she is on feeding tubes & would not even think about not doing it. Her mom is 96 and not functioning but she continues to feed her through the tubes. I dont know why but I started crying in front of all of them. I tried to control myself but listening to this women made me feel horible. I thought why didnt I do it, why did we give up so quickly & allow hospice to dictate to us. What she was saying put me in such a funk that I am now going over again all that happened with my mom. I go out to a party & ended up feeling horrible instead of enjoying. This disease is everywhere & it is just horrible.

Anita, ask yourself this question > "If my quality of life was gone, if I was not able to do the things I liked or even have a conversation or comprehend what is going on or even remember my love ones, would I want a feeding tube put in me just to keep me going?"

I don't think I would want one. I was faced with that decision when my mom was dying. It was a very tough decision as I wanted to do all I could for my mom but in the long wrong, it would have just caused her more pain and it wasn't going to make the Alz go away.

Yeah I wanted my mom to live to be 100 but that didn't happen. We were blessed to have her for as long as we did and she was almost 90 even if her last couple of yrs were changed because of the Alz.

So Anita, you told me once not to beat myself and now I'm telling you... You did what you could so don't beat yourself. I too go thru moments of thinking & saying... "I could've, I should've".

}}hugz{{

I had the exact same thought as soon as I read the words "feeding tube" - that I should have done that; why didn't I do that and have my mom around longer, BUT I quickly remembered what her life was really like and all of those horrible symptoms that we know only too well. I could not have done that to my mom just because I wanted a "shell" of her around longer.

Anita, I know how much you miss your mom. We miss them every single minute of every single day and it is the grief that you were feeling.
We had to make awful choices, but they were the right ones.

We are grieving and the grief is awful, but we will get through it.

I'm sending you a BIG HUG!

Lisa

Thank you Sarah & Lisa: I know what you are saying is right, just I cant help thinking about it. I just am having a bad weekend. Even last Saturday we had friends over & both of them started talking about their mothers. I left the room, are people that insensitive or am I just being over sensitive. I am careful when I open my mouth but I guess some people just arent. I am just having one of those crying times again. Thank you for the Hugs I do need them right now & you are really the only ones that can understand. I guess it bothered me so much because her mom also has alzheimers and she was doing what I did not do.

Hi Anita,
We had to make the same decision for our mom too, and, based on her advanced care directive, we did not go with the feeding tube either. The hospital's Chaplain was very very supportive of our decision, said that mom's directive was very clear.

Maybe, just maybe, the woman who put her mom on a feeding tube and was so adamant about it, was really talking out of guilt because deep down she knows that she did it for herself, not her mom. How is her mom better off?

We all miss our moms and LOs, but we miss them the way they were before this disease took over, not the way they were at the end, which is what we would have been prolonging if we elected to go with feeding tubes.

You did a very loving thing for your mom.

Peace,
Mari

Anita, I'm sorry you're feeling so emotional by what that woman said. You know, when I was reading your post, I had the opposite reaction. I don't like feeding tubes and never would have done that to my mom. As I was reading it, I thought "I'm glad I didn't do that to my mom." I actually feel good about that decision and you should too. You loved your mom so much and did everything you could for her.

Unfortunately, grief isn't always rational. We all know that we did everything we could, but that nagging little voice in our head says, "Why didn't you do more?"

I hope you're feeling better, at least for today. (We are all going to need each other alot during the upcoming holidays.)

This is sure timely... My Mom passed away 10 days ago. She had ALZ and then had a stroke. She demanded that she be left to live alone in her own home under her own circumstances. She had a heart attack several weeks before that and didn't tell me anything or call 911.

Mom's brother (87) had been on total life support in spite of his very clear health directive. My Aunt over rode his directive. My cousin had to take my Aunt back and forth from the ALF to the ER. This went on for four months. My cousin was exhausted - my Uncle clearly wanted to just move on as he kept pulling everything out until they restrained him.

The nurses at hospice are angels without wings. I listened to them and followed my mother's wishes. Yes, the thought of keeping her alive for months and months did cross my mind. When I looked at her in the hospital, I knew she would rather move on. She was a woman of great dignity and class. She moved on - I miss her.

When people make clear decisions about health care directives they are lucid and making intelligent decisions based on their wishes. We must respect that and move on to feeling the grief.

(((hugs)))
The Other Rosas daughter.

Hi Donna,
Sorry for your loss. How similar all our journeys were down this road! I am so glad that so many of us are here to support each other. Your words for Anita (Rosa's Daughter) were very kind.

Peace,

Mari

I am glad I wasn't at the party. I would have had a different reaction than you, though. I would have asked her how she could be so selfish? How could she make her mother last one more day with that much suffering? What good is coming from her having that feeding tube? Just so she can see her mother a few more days? I would have felt so guilty seeing my dad that way.
He would never have wanted a feeding tube. He told us in his lucid moments "if I ever get like him, just shoot me" which of course we would and could never do, but it didn't mean we would prolong things.

As much as it breaks our hearts, dying is a natural step of life. We need to find a way to accept that we did not kill our LO but the disease did.

I am sorry this hit you so hard. I wonder why people say the things they do. It can be so hurtful. I hope you can accept that you did what was best for her, even though keeping her alive longer might have been better for you. I feel this is one last sign of the love you had for her. Hugs coming your way.

Thank you all. That is why I need this board, you truly understand. Your words are so encouraging & you REALLY helped! I realize now that every situation is different as well as the people. She is 69 and claimed to be the sole caretaker (no help), but I dont believe that. They claim to have left her mom (in her late 90s) in a nearby hotel while at this party, I asked who is watching her but didnt get an answer. She said she cooks & purees her food also. I just felt like ----- because she was saying all she does at 69, & I am 52, but she also didnt have kids so whatever. I could not say to anyone that their choice was horrible just as they should not tell me that my choice was unthinkable. Its ok, I can now think that my mom would have hated that. She was so Italian that to eat like that would not be worth it. We tried pureed food when she had trouble swallowing & she did not eat it, she called it baby food. The reason this bothers me is because she was not able to talk to me. I am sure we all feel the same. Not being able to communicate is the worst part of this disease. What I cant stand are these " Know it all people", they must realize every situation is different. I am going to move on & use this as another learning experience.
Thank you again to all!!

Hello Everyone! I've never visited this discussion board before, but I lost my mom to Alzheimer's about three weeks ago. I thought I'd visit this site to see what other's are talking about. And as I read through these posts, one thing jumps out at me: We're all in the same boat here. There is no easy or "right" answer for anyone. For me personally, I didn't want my mom to die, but I also didn't want her to live the way she was. She died on September 28th, but she was gone a long, long time before that.

Before Alzheimer's took over my mom, she used to talk about Terry Schiavo. If you remember, Ms. Schiavo was the Florida woman who was in a vegetative state for many years. There was a long court battle between her husband and her family -- he wanted to remove the feeding tube that was keeping her alive, and her family did not. He contended that his wife would not have wanted to be kept alive artificially. After a long legal battle, the husband won, the feeding tube was removed, and Ms. Schiavo died. My mom talked about the Schiavo case, and said she didn't want to be like Terry Schiavo. So she made a Living Will when she was still cognitive to make that decision, and we abided by it.

At the end, my mom lost her ability to swallow. My brother and I sat with her for 24 hours before death took her, and it was the longest and hardest 24 hours of my life. But we were there for her, and were with her when she took her last breath. Did I want my mom to die? Absolutely not. But would I want my mom to continue "living" in the condition she was in? Absolutely not, and she didn't want it either. Am I at peace? Yes and no. My mother is at peace, and I truly believe she is in Heaven today, and is able to once again walk, talk, think, and remember everything that was taken from her in life. But I am angry that she lost what should have been the best years of her life to this disease. She was 69 when she was diagnosed, and 73 when she died.

I want to extend my thoughts and prayers to all of you. Alzheimer's is a horribly cruel disease, for those who suffer from it, and for those who love them. Peace and best wishes to all.

Hi Kathy,
Welcome to our "club." While none of us wish to be here, we are all so thankful that we have each other. Thanks for sharing your story, and please come back often. We all care.

Thanks for your kind words, Jackie! One of the things I learned is that I am not alone in this. Last year (2008), I participated in the Memory Walk. As we left our meeting place and started our walk through downtown Cleveland, I was absolutely overwhelmed by the thousands of people walking with me -- the thousands of people in my community who are touched in some way by Alzheimer's. My friends didn't understand why I got choked up, but it was just overwhelming. I am not alone.

Thank you Kathy! My mom also lost the ability to swallow. I do agree with all that you said & I did the best thing for my mom. too. Not many people can understand. Next Monday night my church is having a special mass for all that passed this year. I will be thinking of all of you during the mass. Take care & know that you are not alone.

Having worked in senior healthcare for 15 years, and seeing all kinds of 'interventions'...I personally think feeding tubes are very cruel in persons with terminal situations and persons with dementia especially.

Feeding tubes 'hurt' physically, and if you wanted to, you can't talk with them in. Yet, they can keep you alive almost indefinately, thus making the choice of taking them out even more difficult.

My belief is to honor healthcare directives and if someone stops eating...then it's their time!

Very seldom do we put senior pets on feeding tubes...I just imagine that as 'instinctual persons' (our AD LOs) it must be terrifing to be held down and have a tube forced down into your throat, past the breathing apperatus. They make it harder to breathe too, we are not accusomed to something 'in there' ...so I refer back to my reply on Lisa's "I'm doing okay" thread.

Don't be so hard on yourselves!!!
Take go*d care, Shaye