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mike_cfc

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Ok hello everyone! My name is Mike. I am a caregiver for an ALS patient. He was diagnosed in July and now he can do nothing on his own. Well ok somethings he can do like chew his food and swallow(barely) and he can tell me how he's depressed. Now im not trying to sound like I don't care about this guy. I do. Ive been with him since September and its breaking my heart everyday to see this rapid decline of his life.

I need some help here people. Ive signed up for ALS groups around town and once and while we get a visit from the DR saying to "stay the course."
what course? he's dying and pretty soon he won't be able to tell me to scratch his nose? im upset here people. im sorry for that. Its six days a week for 12 hours a day for me with this man and his wife. im stressed and I want to connect with people that aren't gonna paste and copy and give me tons of links to where to go! email me! hell i'll give my number so we can talk on the phone. whatever it takes!

I want to continue to be positive in this guys life but every person has their limits. the family is far away and for the most part are never around.

so my questions:

communication. how do you communicate when your patient is losing his voice? flash cards? computer software?

constipation: im not sure if its the drugs or the Thicken we put in his drinks but something has to give. today he finally went after four days of being unable to go. yes we tried all the other tricks. we had ran the gambit of stool softners and other meds. finally today it happened. now he is dehydrated and very tired.

keeping the head up? patient will not wear a brace. everytime I put him on the toilet his head hangs low and he has trouble breathing. anybody got a suggestion for a solution?

ok im done ranting!

im gald to be here with everyone and i hope to make some connections. God bless everyone here fighting and dealing with this disease!

Mike
 

Jerry Story

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Re: ALS patient losing voice

Obviously you must contact the ALS Society if you have not done so already. They probably can take it from there.

Questions: From July to September? Same year? That looks to me like extremely rapid deterioration. Or am I mis-understanding something? If this really is extremely rapid deterioration, what is the explanation? Is this guy eating a very bad diet? MacDonald's? Cola drinks? Processed foods? Restaurants? Low magnesium? Parmesan cheese? Fish cakes? Mercury poisoning? What?

Don't let the ALS Society or any doctor tell you that MSG and aspartame are safe for people with ALS.
 
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TBear

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Hi Mike:
First, it helps to know where the patient is from in the world before much advice can be provided. Here in Canada there are ALS clinics in the major centres that deal specifically with both treatment and patient care... including caregivers. It sounds as if the family really needs to contact one of these.
Loss of communication is one of the most stressful aspects of ALS and it takes a bit of work to develop a strategy for caregivers and the PALS. Everything is available from winks and nods to word cards and computerized voice synthesizers.
Good luck and get back to us soon.

CHeers

T.
 

mike_cfc

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thanks for the responses tbear and jerry. to answer jerry's question yes the time frame is the same year. im sorry i didn't make that more understood. july to right now. most meals are prepared. he does eat some proccessed foods like his breakfasts foods. but lunch and dinner are fresh veggies and meats and fruits.

tbear thanks for the ideas. im already making out note cards and today we are going to work on a blinking system. im looking into computer software also.

thanks everyone
mike
 

Jerry Story

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Re:

Do the breakfast cereals have MSG (monosodium glutamate) in them? MSG goes by many names, on purpose to hide it. Could you look at the cereal containers and give me a complete list of all the ingredients? There has to be a reason for the rapid deterioration; I'm fishing for a clue.

Even without junk added, wheat, oats, barley, rye are not cool for people with ALS, because of the gluten.
Most meat in stores is red. The reason why it is red (except for ostrich meat which is naturally red) is sodium nitrite. Sodium nitrite is added to the meat to make it look fresh so people buy it. Otherwise it would be gray. Sodium nitrite is bad. (Mike Adams, the Health Ranger) Even without the sodium nitrite, meat (even good meat) in any more than small quantity is probably not very cool for people with ALS because they are supposed to avoid high protein. (Blaylock)
 
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Al

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Hi Mike. If you don't mind I'll ask a couple of questions and maybe put in my 2 cents worth. First : Was your patient diagnosed with bulbar ALS or limb onset? While most literature on the subject says that with limb onset your chances are about 90% that you may last 2 to 5 years with bulbar it is usually about 18 months. How long did your patient have symptoms before diagnosis? If he had symptoms for a long time before diagnosis he may be in end stage now and that would explain the sudden decline.
For the constipation have you tried prune juice? It's an old remedy but it works if you can't chew the dried ones.
If he won't wear a regular neck brace have you tried a cervical collar such as the paramedics use for neck injuries? They come in different sizes and adjust with velcro so you can snap it on and off quickly when needed. Hope we can give you some good answers here. Al.
 

mike_cfc

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hey folks! thanks for all the kind words and comments. i truly appreciate it! want to apologize for not staying intouch here. it has been a truly hard couple of weeks since i posted. we are in the last week of my clients life. the DR said at least 2 weeks left. one of those weeks has passed.

im wanting to know if anybody has any information in regards to the dying process? can he go in his sleep? he is on O2 and oxycondone and a number of other meds. he won't goto sleep. he stays awake and talks to himself. im taking notes on what he says. but im wondering if the hallucenating has to do with the dying or is it just the meds making him do that?

i know death is a touchy subject but we all have to die. i just want to know better for ALS patients that are dying?

mike
 

upila

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Hi Mike,
"Touchy subject?!" I find the post bizarre.
==============================
 

mike_cfc

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tocuhy subject? maybe like most things online the translation from thought to email is not taking with some people. but everyone dies. i love my friend that I have been taking care of for 4 months now. i sit in his room and cry everytime he makes another turn for the worst. but to see him lay there and suffer through all of his thoughts that he can't help but think of b/c he can't do anything else but lay there and think. then yeah im going to look to the kind people of this website and ask the tough questions. you are going to die upila. im going to die. my friend here is going to die b/c of ALS. i thought i would use a source that might have some answers. im sorry you aren't ready to talk about death in any shape, way or form. i want to help my friend. any power that i can obtain and weld to do that I will.

sorry to anyone else that might be offended. i feel sort of stupid for defending myself in this manner. but to get answers or help i can put my pride way behind me here on this.

mike
 

upila

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Mike,
I have no reservation talking abouth dying - we all will, that's for sure. It is the premise that one can give advice how a patient with ALS is supposed to die or give interpretation of symptoms/behaviour in re dying. I think in these final moments - WITH ANY ILLNESS - all one can do is be there and if anything one can do to lessen the pain or suffering, one must try and do so. Sadly, some will go peacefully and others - not. Do the best you can, learn from your own experience in this instance.
 

Al

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Hi Mike. Most ALS patients will die in their sleep. Because of weakened breathing muscles the CO2 builds up and your brain forgets to tell what little muscle you have left to breathe. In some other cases the person may choke on mucus or phlem and not be able to clear their airway. Morphine is sometimes given to end stage patients to aleviate the anxiety of not being able to breathe. It is a touchy subject but a part of life. There are no stupid questions. You won't know if you don't ask. Hope this helps.
Al.
 

upila

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Al, I am sure both Mike and I have to thank you. Mike - for answering his question, and I - for being who you are...and simply for being there for us.
 

mike_cfc

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thanks AL. this so heartbreaking to see this happening. my friend's name is Norm. ive loved taking care of him everyday. its been an awesome experience getting to know this man. im blessed to be apart of this horrible situation.

its really sad on all the things he has been talking about. he was having conversations with family members that weren't there. at one point he thought I was his brother. i just let him talk to me and then when i left the room i took notes on what he said. ive actually been taking notes on everything he is saying in his hallucenations. something happened last night that has hit me so hard. last night in whats left of his voice he told me that he was unsure if he could be forgiven for his sins. didn't know if his past transgressions would be forgiven. then he told me that he didn't know how to tell people goodbye through his whole life. so he decided last night instead of telling people goodbye that he would just stay awake so he didn't have to say goodbye and die.

i gotta tell you folks. my heart is broken this sunday evening. i just got off from spending the last 34 hours with this man. one of my hardest days ever.

thanks for listening/reading and your support and information

mike
 

A Daughters Love

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Hi Mike,

Al always seems to be able to help, and is never afraid to give you an answer, which I think is wonderful.
I completly understand why you would ask what you did about the dying process, alot of us would like to know how our loved one with ALS is going to die. Will they suffer or not? Will it be peacefull or not. It's not a question that many people have the courage to ask, as they may be uneasy about what people will say. I'm sorry I don't have anything to add to Al's post, but please remember that you can come here for support. I will keep you and Norm in my prayers.
 

mike_cfc

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Thanks Michele. I really appreciate your kind words. My biggest fear is that he will choke on his mucus or phlem. I don't want him to suffer thru something like that. I would hope that his medication would just help him goto sleep and that he just wouldn't wake up. its creepy just typing this but i don't want him to suffer anymore. in september he was walking on his own with the aide of a walker and now he can barely move his thumb on his left hand.

does anyone else have any info about the phlem/mucus issue. Our DR assured us that he may have the sensation of choking on his phlem but that he would not die from that. It would be just a sensation he would have and with his hightened anxitey it would feel like he is choking. Norms wife and myself seemed baffled about this piece of information.

thanks again everyone. if I can supply any information for someone else please feel free to ask me.

mike
 
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