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Amber10

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Ok so I have a problem and I don't know how to go about it. My grandfather has ALS and I have been the one who has been telling them all that they need. They listen for the most part but he will not listen to me when it comes to using his alternative method of communication. So he still has the use of his hands so we bought him an I pad. He never wants to use it and I have tried setting goals for him. We have tried games, word searches. He will not pick that thing up. For the past 2 months he was able to communicate by slurring and we can pretty much understand him. The problem for me is that I know this is not going to be the case in the near future and that he will not be able to speak and that he will have to have another way of communicating. What should I do. If he will not use the I pad there is not way he will use eye gaze or anything else. how are we supposed to help him and know what is going on with him? I know this will be horrible for him not to be able to tell us what he needs or how he feels. Any advise on this?
 

lgelb

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Amber, if he still has use of his hands when his voice goes, he will likely pick up the iPad then.
If not, he will still be able to use a head mouse or eye gaze system, probably for a long time or the length of his life. Both are cumbersome but most people with ALS can use one or the other.
He just wants to control what he can while he can.

Best,
Laurie
 

cervus

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Also, while he has use of his hands you can make up letter boards for him. Some with letters, short words or phrases that he might use. Names of people, needs, etc. you can find them online and customize them. Or ask his speech therapist/pathologist. Your grandparents must so appreciate all your help. What a great grandchild! Take care. Yasmin.
 

bob_s

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Amber,

You might want to do an internet search on Speakbook which seems very easy to use without using hands or speaking.

Bob
 

Amber10

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Thank you so much for all of your support and advise it really helps. Sorry it took me so long to reply I actually thought that no one replied because I had not gotten an email. Sorry! Thank you so much. So do you think eye gaze will be just like the ipad or easier for him?
 

Nighthawk

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I've heard that eye gaze is lot easier and comfortable to use than typing on an iPad.
Although, I don't know how it works but you can do a Search and find out how it works.

Regards,

NH
 

Amber10

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Ok I will for sure. So another question I have is that now he is not accepting the breathing machine. I can totally understand where he is coming from, yet my grandmother cannot. She wishes he would but he only does it sometimes to make her happy, which doesn't even really help. Well today was a bad day and he had trouble breathing. Should I try harder to get him on some anxiety pills to calm him down or what should I do because if I take him into the dr they are going to say ok well use the machine. are there any coaching skills to get him and her through this rough patch?
 

Barbie

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It sounds like he is being difficult perhaps because he is not completely accepting what is going on. he may be depressed, which some times manifests as not accepting anything that will make his life easier. Some pals who are depressed think (incorrectly) that something that makes life easier or more comfortable will prolong their life and then they suffer needlessly. of course, the people who love them suffer right along with them.

maybe you could call your ALS association and talk to your care coordinator. they might have a social worker on staff who can talk with him and help him accept help.
 

Annie's Phil

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In my experience, patients with degenerative diseases are commonly reluctant to move on to the next step of accommodation. I think it's because they feel like if they do, then they are surrendering a capability that they'll never get back, and want to hold on to as much as possible for as long as possible. They eventually come to accept their need to make a change, but by the time they accept the last change, they really are in need of making the next one. So I think it's common that they are always one step behind in accepting the next change.

Personally, I'd recommend just making sure they have the best information possible to enable them to make a good decision, then leave the decisions up to them. Psychologically I think they are more likely to accept a change when they know it's on their own initiative rather than feeling that they're being pushed into something.
 

Amber10

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Yes, I agree with both of you. I try to stay one step ahead of them but they seem to not accept it until it is the last minute. They are always really thankful that I got it done anyway but I feel like I am always the one bringing new news to them. I called in a home care place to meet with them and just get all the paperwork flowing so I hope that is not the reason for him acting this way, but from what I am thinking maybe it is that. I really try to talk to him but he does not like to talk about his feeling especially as of late, and he is the nicest to me about all that stuff. So many hard question have had to be asked of him, of which are still not answered. Such as the DNR. I am pushing him to decide so that my grandmother will not have to bear that burden. I have let him slide lately cause I just dont feel like the time is right, but now if he is showing this anxiety I need to act on something to make him and her more comfortable. Do I go more psychological or medical. I will definitely get him back into the dr sometime this week and go over it with the dr. but i truly feel that you all know best!
 

notme

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My suggestion would be to stop pushing him to decide on the DNR. Is he having anxiety only when you bring up his dying? If so, I'm not surprised at all.

Are you his caretaker?

You might mention the DNR issue to the doc in private...but he may not have decided yet. Some choose to vent and fight. Maybe he's considering that.

I'd drop it and spend time doing things he enjoys doing.
 

Atsugi

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Amber, I must agree with others who are hinting strongly that you must stop pushing.
You see, the devil in ALS is not that it kills you--it's that it takes away all your control. You can't control what to eat, what to say: it's all limited. Eventually you lose the control over all your limbs and all your choices. You can't even control peeing and eating and breathing.

Now you want to control him, too? For his own good, I'm sure. But still. Let the man do and have what he wants. It's difficult to do that with someone you love, especially if what they choose is "to go naturally" or to go quickly. But it's still their choice. Support him by being there and doing (or not doing) we HE wants.
 

Amber10

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I appreciate all of your input. I hope you both did not get the impression that I just sit there an bug him all the time about the DNR and all that hard stuff. I definitely keep him distracted with all the things he used to love along with new things that I think will get him through the days happily. DNR came up as a question from the university/doctors along with the question of is he going to want a ventilator. I am just trying to make sure that he is taking control and deciding for himself where as if I don't ask him then he will not be deciding and it will be the family deciding for him. I want to make sure he is getting all that he wants and does not want. For example, Now I am sure that no one ever wants to hear that a medical bed is needed so they can sleep better at night, but this being the fact I brought it in and it is so helpful for the both of them. We even bought him different head boards so that it does not look anything like a hospital bed. The whole family supports him either way. However, it is time for him to make a choice and I don't want the time frame to pass and then him want it last minute and I cannot get him in in time. I am sure you can all see where I am coming from. Thanks again.
 

Barbie

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Amber, you are a very caring granddaughter. But remember, he has only had this diagnosis a few months and even though he is progressing, he may not really "believe" or accept it. You have brought up the DNR, that is a very scary thing. let it rest for a bit. My husband has never signed one. but we do have a living will. I would like a DNR, but it is what it is. actually, the DNR did not even come up until Hospice came in.

As far as the ventilator, I would think that some people can say definitely yes or no, but many would not be sure how to answer that question. most Pals opt to not get one, but a bipap is non=invasive and very helpful for breathing problems.

I am sure he is thinking about the answers to these questions, so try to be patient and know that you did your best. It is good that you are helping him with his daily comfort like bedding and communication devices. he is lucky to have you!
 

momap53

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What a good granddaughter you are!

It's good to be proactive but it's often difficult for us PALS to accept using new equipment or devices. I find. That having things on hand before the need for them becomes critical helps ease me into using adaptive devices.

Good luck.
 
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