Living Wills, loss of speech

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MarciaA

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Hello all!

I was visiting my sister last weekend. We installed hand rails on both sides of her stairway leading to the 2nd floor. In the past couple months since her diagnosis, we've talked a little bit about what she's going through, but nothing real "meaty".

Last weekend, though, she started opening up to me more and I sang your praises. I even took her to this website so that she could see just how helpful the dialog here can be! Anyway, we talked about living wills. She has so many questions that I simply can not answer, so I'm turning to you guys. Do any of you out there have living wills? My sister doesn't know what to put in hers because she doesn't know how far she wants to go. A couple of her friends (non PALS) shared what was in their living wills, but they just don't apply to someone with ALS.

Also, she seems very afraid of the day that she will lose the ability to speak. What sorts of things are out there that you all have tried in terms of multiple/alternate forms of communication?

I look forward to "hearing" from you guys! I've been home on "spring break" for the last few days. Today it's raining and dreary...although it's helping to get rid of the snow! :)

Marcia
 

dana

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Hello Marcia,
I cannot stress enough the importance of a living will. My dad did not have one, and when he went into respitory failure at the ER, they asked us if he had a living will and if he wanted a ventilator. We had to make the choice for him because he did not have a living will set up. We decided to go ahead with the vent, but it was a hard choice to make for my dad. We wished we would have known what he wanted before we got to that point. People live in denial though, and it really says a lot if your sister is ready to discuss a living will now. That is great. My dad still is not ready to discuss the whole living will thing. We ask him how far he wants to go with this and if he would be able to tell us if he is ever ready to "let go" and he just shakes his head. We have an appointment with his lawyer next week so he will have to make some decisions then. Some things that you could discuss are if your sis ever wants to go on a ventilator if she goes into respitory failure and/or if she wants her heart "restarted" if it starts to fail. I know those are a couple of questions that the docs asked us at the hospital when dad was sick. I will know more about living wills next week when dad sees the lawyer though.

As far as communication devices goes, there are a lot out there. If she loses her ability to talk, but is still able to type and/or write she could write messages out on a white board or computer like device. There are computer programs that allow you to type what you want and then push a button, and a voice will say what you have typed. There is a device that we are looking into for dad called the Dynavox. You can look that up on line (I don't have the site handy, but I can get it if you want it). It has picture symbols and can record your voice. Something she could start doing now is record some statements of her own voice into a device like that, and store it away. Then, when the time comes to when she cannot talk anymore, she can use this system that already has statements stored away of her own voice. I wish we would have done this with dad. Little things like "I love you" would be really nice to hear in his own voice right now. Anyways, I know there is so much out there. Many other people probably have some good info about communication devices. Contact your local ALS association and ask about communication devices. They will be able to send you tons of info too. I hope this helps.
Dana
 

ladave

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Hi-

In California it is called an Advance Health Care Directive. My instructions are that if I am still capable of independent communication, should an emergency arise, I am to be placed on a PEG and/or ventilator. If however I am "locked in" or brain dead, no artificial means are to be used. And yes, whatever this is called in your neck of the woods, you need one. In fact, everyone should have one, not just PALS, or God forbid you wind up like Terry Schiavo, that Florida woman who had family members fighting with each other over what she would have wanted and politicians grandstanding outside her hopspice for the television cameras.
 

marlo

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Hello Marcia,

I am sorry you have a need to be here but am hopeful that we might be able to be of some help. I am set up pretty much like Dave. Here in Michigan , it is called a Patient Advocate Form. My eldest daughter will be my spokes person when i am no longer able to speak. And if for some reason she is unable to, my other daughter will do it. I have already filled the papers out and had them signed and notorized to make it all very official so there will be no questioning it. I also had my will made out, notorized and it is on file at the Court House. I really would rather not be on a feeding tube, vent etc. but because of my faith, i need to know i did everything i could, and that it is Gods will for me to die not mine. I also, did not want my children to be put in that position to have to say, mom gets to live or die. I have 3 children and i didn't want them to end up in a fight over something like that. So i sort a took it out of their hands. As for what to put in the will. My place goes to my son, and the other big items to my daughters. This is something that was decided along time ago. Everything else will be sold to pay any bills that i may have left behind. Hope this has been helpful. May God Bless you and your family.

Love and Prays
Marlo
 
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MarciaA

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Dana, Dave, & Marlo,

Thanks for your advice! I too, am glad that she's thinking about this now.

Dana, If you don't mind me prying, I'd love to know how things went with the lawyer. I figure anything that I can do for my sister I will. I'll try to find the Dynavox on the web. I'll let you know if I need the website. Kathy (my sister) said that one of the people at her support group was using one of those. She was impressed with the technology but knew that it must have taken a lot of preparation on the front end to record all those phrases. She's pre-mourning the loss of spontaneous communication...not sure if there's something that can help with that, however.

Dave, you mentioned "independent communication." Does this include using a computer-aided communication device? How picky do "they" get on this matter? I don't know if Kathy (my sister) really knows at this point how far she wants to take it...trach...feeding tube, etc. But I'm sure she would agree with you with the "locked in" thing.

Marlo, I admire your faith! Can I ask how your Patient Advocate Form is worded in terms of the vent, feeding tube, etc?

To all the rest of you out there...I'd still love all the advice I can get regarding living wills. I'd also like to know how to best help my mom and dad cope with this. My father is a very stoic Swede so he doesn't show a lot of emotion. I talked with my mom yesterday and I'm not sure she's getting her emotions out like she should. She broke down when I asked her how she was doing. But then quickly pulled things together...almost too quickly. Should I try to get her to let it all out? Any hints? She lost another daughter (Kathy's and my sister) to a brain aneurism several years ago and I'm sure the thought of losing another daughter is really tearing her up inside. Any advice?

Marcia
 

TBear

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Hi Marcia:
For what it is worth to you in the Excited States, we have "power of attourney" in Canada which can be delegated to a trusted friend or family member. It needs to be done by a lawyer and delegates to the POA on matters of health or finance. Usually you will have 2, so that the same person is not responsible for both. All you have to do then iscommunicate to the POA what your wishes are... even if they change over time. A Dynavox can do that too.

CHeers

T.
 

MarciaA

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TBear,

So, the Power of Attorney takes care of not needing a Living Will? We have Power of Attorney here in the US, too. My sister, brother, and I have Power of Attorney "over" our parents. Do they do double-duty? If I appoint someone to have POA over me, and I communicate my wishes to them, do I still need a living will? Sorry for the zillion questions, just trying to get it all straight.

Marcia
 

ladave

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Marcia,

Jumping in here to say that a "power of attorney" is typically not sufficient in most American states. Some confusion results from the fact that a "living will" is sometimes called a "durable power of attorney". But all a "power of attorney" does is empower someone to make decisions for you when you are incapacitated.

The purpose of the "living will" or "advance heath care directive" or whatever it is called where you live, is not merely to have someone in charge of your medical decisions, but additionally to provide your instructions as to what you want done (i.e., under what circumstances, if at all you want a vent or a feeding tube). Without those instructions, legal fights can ensue as to what your wishes are/were.
 

marlo

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Hello Marcia,

In my Patient Advocate Form, it gives you 3 ( i think) different health statuses. Then it tells you that you dont' have to sign up for any of them. But if you do, only sign up for one. I didn't want my children to have to make that decision and maybe get into a disagreement about it so i took it out of their hands. I signed the statement that says if my brain is still functional even if i am in a coma, as long as the coma is only temperary and i will come out still a normal person, then keep me alive. However, if the doctor feels i will not come out of the coma at all, or brain dead if i do, they are to let me go. As i have said before, i would really rather just be let go, at the first bad spell, but because of my religion i need to be right with the Lord. So i will do what i can to stay alive, and let him handle the timing.
Hope this helps.
Love and Prayers
Marlo
 
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MarciaA

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Dana,

How's your dad? How did things go with the lawyer and the Living Will? I haven't spoken to my sister about them for a while, but am going up there this weekend to help build a ramp to her front door. If you have any advice on setting one up or what to include I'd love some input! Thanks!

Marcia
 

dana

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Hey Marcia,
We ended up not meeting with the lawyer and/or doing a living will. BUT, we did make my mom the power of attorney for my dad. Basically what it does is give all of my dad's rights to my mom. Both my mom and dad signed it and had it notorized by someone from our business. We discussed with dad about how this disease progresses and how far he wants to go. I know that he researched it all before, but before he signed the power of attorney, we wanted to know that he really knew what he was facing. We talked about how if and/or when he loses function in his arms and legs and could no longer communicate, and his heart stopped beating, would he want us to make the decision to start his heart back up for him or not and he said yes. We asked if he wanted to be a part of that decision and he said yes. We went into detail about other stuff too. The talk was vague, but it was a start. Ultimately, my mom has the final say in what happens in dad's life, but she will not make any of those decisions on her own. We will do it as a family, and I think dad finds comfort in knowing that we are making decisions together for him. He has some confusion along with this ALS, and I don't think he trusts his own decisions.

As for building ramps, we just built a new one outside of mom and dad's house. I have no idea on how to build a ramp so I won't be much help in that area. We had one of our workers for our business build it for dad. One cool thing that he did was he painted the ramp and mixed sand in the paint. This way, the ramp has some texture and it won't get slippery. We had another ramp before (for my cousin who is in a wheelchair) and we just left the wood bare, and we had a few people slip and fall down the ramp (including my 2 yr old son) because it was so slick. My husband stapled sandpaper strips to it, but they eventually ripped off. I think that the sand in the paint idea is going to be the best bet. Dad's ramp is made out of wood and it is at a 5 degree slope (very gradual). It is pretty big, but we did not want it steep. Our other ramp was steep and dad seemed scared to go down it. We also put stairs off to the side of it so other people can quickly go up and down it. There is a rail and a little lip on the side so the wheelchair won't be able to go off the edge. My advice would be to have someone who is handy with working with wood make you one. Many lumber places (depending where you live) will even donate the wood if you tell them what it is for.
Good luck and have a great weekend with your sis!
Dana
 

MarciaA

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Dana,
I appreciate all the info about living wills that you've offerred! It's good to know that some flexibility can be built in so that your dad can have a say in it along with your mom.

Luckily, my brother-in-law (Kathy's husband) and my husband are both very handy. They've both done work on our houses and feel very much at home with a power tool in their hands! :) We're using specs from this website. http://www.wheelchairramp.org/rampman/manual/rampindiagnosed.htm and my brother-in-law drew out a scale drawing of it on his computer. There will be lots of family and friends in St. Paul at their house this weekend to help. Now we just need the rain to hold off so we're not delayed...or really muddy!

Marcia
 

Al

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Thanks for that site Marcia. I am in the process of some of this type of work and the site is very informative. Al.
 
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