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ekoozmin

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Hi--I posted this in the new member site, too......sorry!

What a beautiful new site--I love the color scheme! Was there ever a consideration of keeping the site's essentially Canadian identity? Just wondering.

Well, I am sorry we all have to be here. I am the daughter of a PALS who was diagnosed in 1/2005 at age 74. We went through the Lyme disease stuff, and though he tested positive, antibiotics did nothing. He progressed very quickly, is on Bi-Pap full time, refuses peg and vent. He has lost the use of his arms and legs, and his diaphragm is very weak. He's still hungry, though, and loves his pie and ice cream. Hospice was brought in 8/2005.

Liz
 

John1

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Hi Liz,

Welcome and sorry you have to be here. Your dad's progression sounds to be pretty fast. Will he read the postings by, and about, about PALS who are similar? It might help him if only to know others are having similar struggles and how they cope.

Glad you like the colour scheme. My guess is that it changed from Liberal red to Tory blue to reflect the change in government (lol). Are you from Canada? You might want to add your location so people can respond more helpfully by knowing where you live. You can easily add that info by clicking on "User CP" at the top of this page.
 
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A Daughters Love

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Hi Liz

How is your Dad doing with eating. Is he still able to eat most things? My mom is staring to have some problems with choking and has some repiratory problems, she said she doesn't want a feeding tube or vent either. I am just wondering how a person deals with all that. As you dont want them to struggle anymore than they already are.
 

ekoozmin

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Feb 24, 2006
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Hi guys! Thanks for the note, John--I'll fix my profile. I'm from Virginia, just outside of Washington, D.C.

Michele--My father still likes to eat, in fact it's one of the few things he finds pleasureable. His favorite foods are tomato soup, matzoh ball soup, egg salad, eggplant caponata, sauteed brussels sprouts, any Chinese food, McDonald's Big Macs, lemon-meringue pie, and soy ice cream!:D :D :D Of course everything is cut up tiny and he has a sip of water or juice in between bites. Feeding him is a challenge as you have to make sure he doesn't aspirate anything.

So, the bulbar symptoms are not really there yet, although the speech therapist noticed fasciculations of his tongue. Dad says he can't feel them. His voice is no longer the strong deep bass he used to have; now he is haorse and he lacks volume, mainly because you need air to talk and he is not breathing well anymore.

I think he feels that as long as he is still able to eat, he's not ready to die--it's that simple to him. There have been a few days when he has been so frustrated with his situation that he has asked the hospice nurse what would happen if he just chose to quit eating. I don't think he'd last more than a few hours before his stomach grumbles and he starts craving a piece of pie!

Good luck with your mother. Just be there for her. I know what you are going through, and it is very hard to sit by while your parent makes a choice not to vent or have a feeding tube. Dad's hospice social worker says try to think of it this way: Dad is not allowing himself to die by refusing the vent, but that he is choosing to die by not having it. I guess that makes sense, but I still have a hard time accepting it.

Take care--

Liz
 

alliebt

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Jan 18, 2006
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Hi:

My MIL chose not to have a vent or feeding tube put in when she progressed very rapidly with ALS (the time frame between diagnosis and when she passed away was 4.5 months). While it was difficult to accept her decision, we had to respect her and her choice. I work in the Rehab field and I think it was a little easier for me to accept as I had to learn about respecting client's wishes in school, but it was still hard because this was someone I loved and cared about.

I think for people with ALS, making those kinds of decisions (whether to have a vent or feeding tube or whatever), it allows them to maintain some control of their lives at a time when not much of their life is under control. It also allows them to pass away on THEIR terms, not medically influenced terms. I watched the episode from ER that had James Woods portraying a man with ALS who had a trach put in against his will, and had a difficult time watching that. The best way to love someone and respect someone is to listen to what they want and accept it, even if it means that you'll have less time with that person than you wanted to.

Anyways, don't mean to be a stick in the mud, but just wanted to add my two cents...

Allie
 

ekoozmin

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Allie--

I'm glad you posted your two cents! You have a valuable perspective!

Liz
 

TBear

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Hi:
Preferences for treatment can change with circumstances. Early on, my wife had decided that she would want a trach, but decided against it as our family life settled. SHe did have the g-tube installed... but definitly wanted to make sure that she could still enjoy a glass of wine or two too. As a caregiver, I believe that we are just messengers and in some cases advocats for the PALS.
CHeers

T.
 

A Daughters Love

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Oct 8, 2005
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My mother use to work in nursing home, and has first hand experience with this. I know that is a big part of her not wanting a vent or feeding tube. My only wish is that refusing these things will not make her final days that much more difficult for her. I 100% respect her wishes and have read that many people do not take a feeding tube or vent. I also understand that this means I will have less time with her. I just don't want her to suffer!

T-Bear did your wife have any other breathing support(Bipap)?
 

TBear

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... nope. Her breathing remained at about 80% capacity until the last day. Everything else was gone but that and she wasn't having difficulty sleeping at night.

T.
 

A Daughters Love

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tbear,

I am very confused. I thought that your breathing capacity slowly decreased until you could no longer breath on your own? Could you explain it to me if you have a minute?
Thank you,
 

TBear

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... it was a very rapid decline.

T.
 

Al

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May 25, 2004
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PALS
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10/2003
Country
CA
State
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Hi Michelle. Once again I have to say that we are all different but the same. Sort of. I was diagnosed in Oct. 03 and needed a Bipap at night in Jan of 05. Some others have been at this lots longer than me and still don't need a Bipap. Some need it quicker than me or some need a trach and a vent. You can't predict it.
Al
 

Dee

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Mar 1, 2006
Messages
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Hi all. Writing all your post has made me think about my dad and how his decisions. He passed away 2/5/06. The last few months of his life, his condition deteriorated very quickly. He went from the hoarse voice to not really being able to form words. He didn'nt need his bipap machine full-time until the last six weeks. Then he only took it off to eat. At that point he could only eat mainly liquid or very soft foods. He was only 120 lbs at that point. I don't think my dad suffered but just gave up the fight. His oxygen was started to dip into the 70s but I hear it is the build up of carbon dioxide that helps them just go to sleep. I think he was mainly uncomfortable at times but I don't think he suffered too much. My dad also refused the feeding tube and trach. I think the him not wanting the tube was the hardest for me. Seeing him only able to consume such little calories was painful.

Praying for a cure!
 

ekoozmin

Active member
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Feb 24, 2006
Messages
46
Hi Dee--I just read your post and found your other thread about sharing grief. I am so sorry that you have lost your father. Wow--you have really been through a lot. I think it's really a good sign that you are looking for ways to cope. One way to cope is to share your experiences with everyone, and in that way, your father's death will not have been in vain--what he went through could really help someone else in their decision process.

I already lost my mother (a sudden heart attack 7 years ago), so I know what it's like to lose a parent, but everyone has a unique way of grieving and coping. Don't let anyone tell you what you should be doing or how you should act. In some cultures, though, there is a prescribed way of acting after the death of a family member, and perhaps that makes sense for people who really don't know where to start.

Take care of yourself!

Liz
 

A Daughters Love

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Oct 8, 2005
Messages
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Hi Dee,

I to am sorry you have lost your Dad. I hope that the fact he is now at peace, gives you some comfort.
I am gratefull you are here. As you can see many of us have questions, and I'm sure you will be able to help us. Thank you for joining us. Take care
 
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