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Jennifer D

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03/2012
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New York
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Hi all,

My 47 year old husband has ALS for the past 3 years......He has now decided that he does not want any medical assistance, like a feeding tube, diaphragm pacer or any other kind of medical intervention. On one hand I think it is very brave of him, but on the other hand I don't really understand how he does not want to at least try and fight for his life? We have four children; a 20 year old, and three 16 year olds who are still in High School. I'm so scared I don't even know what to do. I don't want to force him to do things that he does not want to but I also don't want to stand by and do nothing.

Any advice would be much appreciated. Thanks everyone.

Jennifer
 
Hi, Jennifer --

>He has now decided that he does not want any medical assistance, like a feeding tube, diaphragm pacer or any other kind of medical intervention. On one hand I think it is very brave of him, but on the other hand I don't really understand how he does not want to at least try and fight for his life?

well, I understand. Last night I asked my wife Sandy how long she thinks I would last after I can no longer swallow. I don't (probably won't) allow a peg. What does it do other then to extend the torture? I want her to want me to live, but I don't want her to go thru what the other CALS have (see 'pity party' thread).

It is a tricky time. Pass on to him that I share his thinking and also do not know what to do.

this is our time of greatest challenge and there, imo, is no right or wrong.

My thoughts are with you both. If you haven't seen the 'ABCs of ALS' on youtube, you may want to. Also search see:

https://www.alsforums.com/forum/memoriam-memory/25406-soar-high-your-wings-my-love.html
 
Sounds very similiar to my story. My partner of 13 yrs "gave up" soon after his diagnosis, I would spent hours researching on the internet for anything from the initial shock and
denial "the dr's are wrong he has Lyme disease", ordering products to help him adjust as his muscles wasted to even looking at going to China for stem cells but he wasn't interested in any of it. Sure he would pretend as though he was going along but in the end I realized that he was just trying to appease me and he wanted to leave this earth before that horrific ALS robbed him of everything. It has taken me some time to understand his reasoning but now I respect his decision. It isn't easy for a 6.3 275lb independent man to suddenly depend on people to help him eat, scratch, wipe his nose, put him to bed, observe him losing his ability to speak and see adult diapers sitting in the corner and knowing that next along with soon becoming a prisoner in your own body. I now respect his decision to "leave on his terms" although it hurts like hell. I HATE that bish...ALS.
 
> It isn't easy for a 6.3 275lb independent man to suddenly depend on people to help him eat, scratch, wipe his nose, put him to bed, observe him losing his ability to speak and see adult diapers sitting in the corner and knowing that next along with soon becoming a prisoner in your own body. I now respect his decision to "leave on his terms" although it hurts like hell. I HATE that bish...ALS.

thank you ...

btw, I'm now only 246 lbs :), but my arms and legs look like hell and I haven't eaten since January :-(.

Could it be worse? yes. FTD, depression, no insurance, no VA, en infinitum -- but it is what it is.

>I'm so scared I don't even know what to do. I don't want to force him to do things that he does not want to but I also don't want to stand by and do nothing.

Jennifer as long as he knows you support him as he works with you to make these hard choices you will both win.
 
it took me some time to let go and come to grips with the idea that this is his battle and I am only the support crew. It is easy for me to say "If it were me I would X,Y or Z...", but the truth is I really don't know how I'd feel or the choices I'd make face with this disease. All I can do is be there for him whatever his choices are and realizes he is more amazing than I ever knew.
 
>All I can do is be there for him whatever his choices are and realizes he is more amazing than I ever knew.

Meg you are our inspiration!

Hugs,

Max
 
Jennifer, we are having the same discussions here. My first reaction was that he should fight as long as possible. I'll take care of him and don't want to lose him. Then I read about what other's are going through and it's horrible. Then I saw someone last week who is on a tube and vent and still works (from home) every day. She has a beautiful smile and a lovely family. This is such an individual disease and individual decisions that depends on so many factors that it now seems to me that my best approach is to support his wishes. I don't want to lose him, but I also don't want to be responsible for trapping him in a future where he will be miserable. ARGH! Our children are all grown and hours away, so they are not face-to-face with this every day-I'm so sorry your children are dealing with this during their high school years (no time is good, but high school!).
 
Jennifer, such a tough discussion! All of these thoughts. I also feel very afraid and scared at the thought of being left alone. But.... I am more afraid of watching My Barney being locked in a body that no longer functions on any level. To me being a care giver encompasses so much more! This is not about me and my fears it is about My Barney. We have been together for 42 years and throughout the years have had this kind of discussion on what we would want and what we would expect if anything like this happened to either one of us and always came up with the same answer and the same promise! You will make the right choice.
Hugs
Linda
 
How to motivate and inspire your people in difficult times

Chris Witt
Tags: talent management

These days, if you’re a leader of any type, you can’t simply order people around and expect them to do what you want. They may follow your directions, if you are watching, but once they’re left on their own they’ll go back to doing what they think is important.

Leaders today, more than ever before, have to win people’s cooperation. And there are two main ways of doing so: motivation and inspiration. Although the two words are often used interchangeably, they actually mean quite different things – depending on what you want to achieve.

Motivation is about moving people to act in a way that achieves a specific and immediate goal. When you’re motivating people to do something they may not necessarily want to do, you have to offer them something they want in return.

When coaches give their teams a pep talk during halftime, they are using motivation. They want their players to charge back onto the field or the court with renewed energy and focus, even though they may be too tired or disheartened to try. Their reward? Victory.

To motivate your people:

Tell people exactly what you want them to do. Motivation is all about getting people to take action, so don’t be vague. Avoid generalities like, “I want everyone to do their best.” Say, instead, “I need you to come in over the weekend so we can get this project done on time.”

Limit the amount of time or effort that you’re asking for. It’s easier to ask people to work late work one night or even every night for a week than to expect them to work late indefinitely. Set an end date.

Share in the sacrifice. Leaders don’t ask people to do what they themselves aren’t willing to do. Don’t tell your people to work over the weekend if you’ve got plans for a spa day. Roll up your sleeves and share the load.

Appeal to their emotions. Fear focuses people’s attention and can be an effective motivator. (“If we don’t get this done right now, we’ll all lose our jobs.”) But if you keep resorting to fear, you’ll end up de-motivating people. People are also motivated by-and prefer to be motivated by-positive emotions like excitement, pride, a sense of belonging, and the thrill of achievement.

Give people multiple reasons for doing what you want them to do. You can give your own reason or the organization’s reason for requesting the action. “If we don’t get this project completed on schedule, we’ll lose the contract.” But the best reason of all is always personal. It would be nice if you could give your people extra days off or even a bonus. Or, you may talk about something as intangible as the camaraderie that comes from having achieved something important together. But things being what they are these days, the best you may be able to offer is the hope that no one will lose a job.

Inspiration, on the other hand, involves changing the way people think and feel about themselves so that they want to take positive actions. It taps into people’s values and desires.

Commencement speakers – the best ones, at least – inspire their audiences. They talk about the challenges the graduates will face, either personally or collectively, and the possibilities of making a difference. Inspiration appeals to the best aspirations of people, and its underlying, often unspoken message is “You can become what you want to be.” No reward is promised, other than the reward that comes from within: the sense of personal satisfaction.

As a leader, anytime you talk about values, about identity (either the corporate identity or each person’s identity), and about long-term goals, your intent – whether you know it or not – is to inspire.

To inspire your people:

Be the change you want to inspire. Your reputation, your character, your behavior will inspire people more than anything else. The only way to call the best out of others is to expect the best from yourself.

Tell a story. Stories don’t tell people what to do. They engage people’s imaginations and emotions. They show people what they’re capable of becoming or of doing.

Appeal to people’s value system. Ask them to act in a way that is consistent with the values they themselves profess.

Trust people. When you’re inspiring people, you’re not telling them exactly what to do or giving them precise directions. You’re empowering them to be their best, trusting that they will then do the right thing. And the right thing they do may not be what you were expecting; it may be something beyond your wildest expectations.

Challenge them. People aren’t inspired by doing the ordinary or by meeting expectations. They’re inspired by the exertion, creativity, and sacrifice needed to exceed what they themselves thought possible.

Motivation and inspiration are not the sole province of professional speakers and preachers. They’re tools leaders use all the time – in one-on-one conversations, in meetings and in formal presentations – to bring out the best in their people. It’s just a matter of knowing the right time and the right situation.

When there’s an immediate, short-term and specific goal that you want your people to achieve, you need to motivate them. When you want to shape people’s identity and their long-term aspirations and commitments, you need to inspire them.

Antoine de Saint-Exupéry, the French aviator and author of “The Little Prince”, wrote, “If you want to build a ship, don’t drum up the men to gather wood, divide the work and give orders. Instead, teach them to yearn for the vast and endless sea.” Sometimes you need to do both. You need to enlist and organize people to do a specific task-to build a ship according to specs, on time and on budget-and sometimes you need to activate people’s desires and stand aside. Who knows, you may be surprised by what they do.
 
the methods I would use from the article above are appeal to his values and emotions. have a conversation where you are direct and frank with him about what it is you want him to do and be prepared for him to tell you why he wants something different. discuss depression, it may that he is depressed and suffers from apathy, that he simply doesn't care about anything anymore. if this is the case, encourage him to get some help with the depression, then maybe he will change his line of reasoning. Good luck to both of you.
 
Man.....you guys are so brave......when I started reading this thread I immediately thought of Max and his current dynamic about this issue. I know these questions lie ahead for me....logically "quality of life" is a huge common denominator.
My friends and family are taken aback by my decline....I am 6'5" and weigh about 325. I have always been larger than life and had an outgoing personality, this has been so hard for me in my progression.
Jennifer................be strong and the answers will come to you.
 
Jennifer;
This is such a tough one, and like the others have said this is his fight, and none of us truly know what we would do until we are actually in that struggle. My husband has the complete opposite attitude and is able to see the miracles of life even in the smallest thing. He has a light that even strangers see, but I on the other hand would find it torture to not be able to move. I THINK that I would be more like your husband, but again I couldn't say for sure because I doubt I can even imagine what having ALS is like.
As a nurse I have had the opportunity to talk to many dying people, and I remember one man in particular. He was married to a woman quite a bit younger than him and had a 9 year old son, but was dying of cancer. He couldn't sleep, as he worried so much about letting them down, and how they would do with out him. So each night I would sit with him and let him say all the things he wanted to say but couldn't say to his wife, for fear of looking like a coward, I was his sounding board. On my days off I dreamt of him coming to me and thanking me for allowing him the peace of getting that off his heart, and the next day I returned to work to find that he had passed away around the same time as I had the dream.
This is one of the hardest things you will have to do, next to losing a child, but if you can let him say and do the things he needs to with out feeling like he is letting you down. In the end he can't stop this process and will die, but what we can do is let our PALS die with dignity. He is not committing suicide, he is allowing this disease to take its natural course. You will be in my prayers, and I am sending you a big cyber hug.

Paulette
 
lovely story Paulette.

My husband also has a very strong will to keep living. However, he has said no to a peg and a bipap several times. Personally, I think those two items are very helpful for the comfort of the Pals--they will make life much better but not necessarily extend it long term. to me they are like getting a PWC--just equipment that is helpful. I would only draw the line at an invasive vent.

All you can really do Jennifer, is tell him honestly how you feel, and have a heart to heart talk with him. but once it is out, you cant keep harping on it because he has to make those decisions. If you honor his decisions you are not doing "nothing" and you have every right to be scared (even if he had all the equipment you would still be scared:) ). My husband and I had a big talk the other day...I was scared to bring something up and had been stewing on it for a couple of weeks. Last weekend we were talking about a friend who had just died from cancer and we were talking about his choices, and that seemed like a great segue into a conversation about my husband's choices and my feelings. we both cried a little but we both talked about something that was very important to talk about out loud. afterwards I felt better and I think he did too.
 
Jennifer, I don't think I can say this better than what others have said.
In the early days after my husband was diagnosed, I was in a state shock + anger + denial. During that time, a good friend told me that when we look at life as a journey, we need to remember that there are no battles during that journey, because life is not a war. Journeys have ups and downs, and just as we accept and enjoy the ups, we can accept the downs, even though we don't really enjoy them, we learn from them. We learn about ourselves, each other and learn from each other more during the tough periods.
These are difficult conversations that you and your husband are having. I am sure you and your husband will be able to face the challenges whatever the choices you both make.
 
I totally understand both sides, I feel.

I want to live forever. But when I saw my wife in the totally locked in state, it just scared me to death. I won't go on. The thoughts I have are too scary for public consumption.
 
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