Status
Not open for further replies.

heatherlev

New member
Joined
Apr 22, 2005
Messages
7
My brother was diagnosed with ALS a few months ago. He can still talk, breathe and swallow fine, but otherwise is totally disabled (can't stand up, uses a wheelchair, etc.).

He is thinking about whether he would want to use a respirator & feeding tube when he needs them, or not. He is mainly afraid of what his life would be like if and when he is no longer able to move or possibly communicate; I think he is afraid he would not be in a good environment, wouldn't be listened to even if he could communicate, or might be terrified and depressed and unable to handle the fear or paralysis. Both our parents are alive and he is currently living at home with them, but we don't know whether he could or should continue living at home if/when his symptoms progress. Also, we have no clue where he would live if not at home, and what his environment would be like.

Honestly, I don't know what his quality of life would be like. I told him that we would support any decision he makes, and that any decision is his alone. I actually think he probably doesn't need to make a decision just yet. However, he also doesn't have enough information about what life is like on life support to make a decision about whether he would choose it.

If anyone on this discussion board is either living on a ventilator or else knows someone who is, I think we'd like to know what their life is like, how they communicate, how to make the most of the life you have, whether it is bearable, etc. I think we'd also like to hear from people who chose not to use a ventilator...

I know this is a tough and emotional topic, but any opinions on this topic are welcome. Thanks.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi there. Sorry to hear about your brother. I am on a Bipap machine at night to assist with my breathing. Eventually I will have to drcide whether to go on a vent full time. I have read about people that wake up every day happy and reasonably content in this situation. I haven't made up my mind yet because when the time comes I will assess my quality of life at that time and make the decision.
There is a good website that has Pals (persons with ALS) and Cals (Caregivers) writing about their situations. This might help you out.
http://www.alsindependence.com/
Take a look at the site. Click on Pals and Cals Stories.
Hope it helps. Good Luck. Al.
 

Mike27

Distinguished member
Joined
Apr 19, 2005
Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
Hello,
Sorry to hear that your brother has to take this journey.

I know quite a few people who have feeding tubes and ventilators who lead very fulfilling lives!
That fear is quite common. I had that fear for a looong time! When first diagnosed, I wouldn’t attend support groups as I didn’t want to see people on respirators, wheelchairs, tubes etc. I was basing this decision through fear not common sense. I finally swallowed my fears and went to a meeting and it was pretty good! After meeting, laughing and joking with people (who had breathing machines, feeding tubes etc) I realized that it was fine. Everyone talked, whether by voice, machine or pen and paper. We all had something to give at the meeting. I also learned that every person with ALS is different! Some need the equipment, others didn’t.

I’ve had this disease for 12 years, I don’t have a feeding tube or respirator yet. Will I need them in the future? Probably. Will I get them? You bet! I want to be around for my daughter’s graduation (she’s 22 months old). But that’s my decision.

Fear is a great motivator. It can also be a great detractor! Al, who responded previously, was firefighter. He knows all about fear and overcoming that emotion to get the job done!
The mind can create situations and scenarios that are totally out of context with reality. The best thing, for your brother to overcome his fears, is to face them.

Go to the ALS society and investigate all possible options in whatever happens with ALS. And go to a support meeting. This was, for me and my wife, an eye-opening experience.
I understood then, that ALS is only an obstacle on life’s road-not the road itself!

Cheers and good luck!
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
Hi Heather,

This truly is an insidious disease. But you will get a lot of support and information from caring knowledgeable people - Al and Mike are cases in point - I know they've helped me out immensely - thanks guys - you're the best!

I was diagnosed with ALS in June of 2005 and am still trying to come to grips with what this diagnosis entails.

I'm slowly losing the ability to do simple things - which will gradually get worse I'm sure. I do get very depressed when I think about all the things I may no longer be able to do in the near future - but then I try and console myself about all of the things I will always be able to experience - friends, love and laughter - and I don't feel so bad...

In addition to Al and Mike's post - you might find reading about William Kibbie's experiences helpful. He has been living with ALS since 1973.

Check out his web site: http://alsisnotfatal.com/titleindex.html

The topic about why he chooses to live with ALS deal directly with your issue...

http://alsisnotfatal.com/because.html

All the best...

Richard
 

heatherlev

New member
Joined
Apr 22, 2005
Messages
7
thanks so much

Thank you all so much... these links are absolutely terrific!

I think this will really help my brother make an informed choice.

Really, the thing I'm not sure of is whether he is even ready to deal with the realities he might be facing.... he gets very upset when confronted with these future situations. I'm not sure whether to just try to distract him and talk about other, more pleasant things, or to try to get him to think about these things more.... I guess I'll just take his lead and try not to force any tough conversations, but it is so helpful to hear from people who have "been there".

Thanks!
 

dsmode

Member
Joined
Sep 4, 2005
Messages
19
hi heather, such a pretty name, and i am sorry for your brother. this is an incredably devastating disease. let your brother deal with one reality at a time. you will find that as time goes by, the off limit subjects of today will eventually be open subjects. with als there needs to be times of mourning for the losses that occur daily. thank God he has you to support him. whenever i have asked God for help, he has always come thru for me. and he will for you too. dar in ohio-first symptom 5/03; diagnosed 1/04; bulbar onset.
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
Hi Heather,

Dar has a good point. There is no need to make any of these decisions now - or to even think about it.

I can understand the need to sort matters out ahead of time in cases where someone is suffering from something like alzheimers, where it may come to a point where they may no longer be competent to make there own decisions.

...but this is not the case with ALS - your brother's mental faculties will be unaffected and he will always be able to indicate his wishes...so the "wait and see" approach as Dar suggested is the best...

...it's amazing how quickly the mind can adapt to a "new normal"...
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
City
Uxpatch
Hi Heather:
I agree that he will not have lost his faculties, but as time goes on it will become more difficult to communicate his wishes. You can approach him as he wishes but you he should also soon consider designating power of attorney to someone that he trusts. I was POA for my wifes care and finances and it made our life much simpler over all.
Good luck

CHeers

T.
 

nic01

Member
Joined
Sep 17, 2005
Messages
16
Hi Heather
My mother was diagnosed in August with this horrible disease. Right now, she says she does not want a full time vent. I think she is worried about her quality of life. We are going to our first ALS support meeting tonight so she may get some different insight. I told her I would honor her decision, no matter what it might be.
Jennifer
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I too said I would not want a vent. Two years later my feelings have changed. I don't need it yet but am considering it. I'm waiting to see how the rest of the body is functioning at that time. Then I'll make the final decision. After discussing it with wife and family of course.
 

Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
Hi guys,

I also remember Henry saying no feeding tube and no vent. He was so adament about it too. However, as someone said earlier, as you progress, you might change your minds. Henry did, he got a feeding tube, and it sustained him for about a year. He did have the bipap, however found it to be somewhat uncomfortable and only used it a couple of times. That was his choice. I found that as Henry proceeded and got weaker with the illness, he chose to prolong his life with the very things that he said he would not have or do in the beginning. Ultimately, he was not ready to give in to the diesease and still had the need to fight. I am so glad he did, we had him here for about one year longer than maybe he would have been without these devices. Do not be to hasty in making these decisions now if you are not ready for them. I agree with
Ted however, make sure that a POA is appointed soon, and that this person will be able to help with these decisions in the future. The unkown is always very scary, and rightly so with this ailment. Remember that you are not alone, and we will try to help you along the way the best we can. All the best. We will pray for you and your families.

Stay Strong....

Carol
 
Status
Not open for further replies.
Top