How does one cope when it gets even worse in the future?

[alspatient]

I am curious about how I will be able to convey to the care giver for example when it hurts. One day I woke up in the night because it was very cold and called my wife to switch off the fan and cover me with a rug. How do I do this when I am no longer able to convey that I feel the chill. Or when my tooth aches and I want medical attention how is it conveyed to the care giver.
It really scares me to anticipate all that. Probably some care giver may tell me how the Pals do this.
Rgds,
Bob.

 

[lunarruna]

Hi Bob....
I find this part of ALS to be one of the hardest and was afraid about it form the start. My husband has had ALS , diagnoseded 8/2004 and no voice since about 3/2006. It is amazing the signals you can figure out and adapt. Of course many people have voice synthesizers/computers to speak for them, but when laying in bed for example, sometimes it is hard to use the computer. We rely much on some eye signals that my husband has developed for different things...he may glance at the item, for example, and I first try and get the noun/subject for what it is about...I ask 'yes/no/ questions...is it about your temp?, is it about pain?, is it about toilet? and then when we get the subject I ask further...are you cold/hot...etc. --I wont say it is easy , but its works out for us in the end. There are many other techniques. People make boards with pictures of all the common needs and then the caregivers points to the different items and the PALs can blink or otherwise indicate that choice. For more specific needs there are alphabet boards and the caregiver runs their finger along the alphabet until the PALS indicates and letter by letter a message gets spelled out.
I will tell you that in some ways the stage you are at, where you are worrying about all that will happen to you is one of the hardest. It is amazing how we adapt to things...my husband never thought he would even want to live through all this, but he does find some joy in each day and we continue along. He has lost all except some limited movement of his head. He is on Bipap all the time but will not be going on a vent.
Where is your town in India? I love India--I have traveled to Calcutta and Varanasi, also Nepal.
Take Care, Beth

 

[alspatient]

Hi Bob....
............ He is on Bipap all the time but will not be going on a vent.
Where is your town in India? I love India--I have traveled to Calcutta and Varanasi, also Nepal.
Take Care, Beth

Is he aware that he won't be going to the vent?
I would like to make all the arrangements like I try telling my wife and my mother that I would not like to go on a vent but they do not like to discuss about that. They may probably have a Hindu view of life which is that things are preordained and we should not interfere with the future which is summed up in this song.
Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.

But unfortunately its my future. I want it to be as comfortable as it is as long as possible but then it scares me when it is no longer easy. It is the uncertainity that scares me. If I were to die peacefully and I knew it then it won't scare me.
Do you get what I mean? Like your husband thought that he would not live to face that. I have lived with the symptoms from 1998 and I was Dx in 2000. I have lived with the death sentence for seven years. It did not scare me till now. Unfortunately it does now.
I live in the southern part near the tip in a place called Tirunelveli and in the province called Tamilnadu.
Rgds,
Bob

 

[lunarruna]

Bob,
Yes--all along he has made the decisions about his future...we do talk about it a lot, which is important. I hope at some point you can have those discussions wiht your family. He put it in writing in a 'living will' document that we have here in the states. First he said--no feeding tube or anything. And he wanted to be sure that if he aksed me I would help him with some kind of assisted suicide. He was and is afraid of losing control of that. Then when the time came he considered it and did get a feeding tube after learning more about it. The bipap is keeping him alive right now--he would have died in Oct 06 without it. He wears it 24/7. He has thought very hard about whether to vent or not--it is not easy, of course. He finally decided no. It was hard to talk about that part--I just told him that whatever he wanted to do I would stand by him and we would work it out. I gave him a bunch of websites with info so he would be informed.
Maybe you could share some of the stories of other PALS you have learned of online with your family...I dont know--it is difficult for sure. Of course it shoul deb your choice, with some inout from your family.
So is it easy to get care, etc for being on a vent where you live? Here we live in the rural countryside and the local hospitals have never had anyone on a vent and didnt want to work with us anyway.
Regarding the end, we have talked about it and we have morphine (from our Hospice program) ready here in the home for when he needs it and we will be sure he isnt in pain.....we also have an agreement that at any time if he doesnt want to go on then he can request no feedings through his tube and he can pass that way. All the control will be his till the end. I am his legal medical guardian by law and act on his behalf when he cant. i dont know if you have similar laws in that respect or not...
Good to talk with you about this difficult issue....best of luck to you--Beth

 

[alspatient]

Serous stuff. Please keep away if some people are sensitive to this discussion.

Hi lunarruna,
I don't know if the other members in the forum are open to a discussion about what lay ahead for the PALS. The issues discussed here relate mainly to the day to day issues and daily care.
Euthanasia is not permitted in India. I don't want to anything that is illegal and leave a stigma on the survivors. If I end my life then it would be unfair to my family who would be blamed for neglecting and driving me to take the extreme step because of neglect. There are no precedents like the Sue Rodriguez's case here in India.
I did not quite understand what you meant by
" And he wanted to be sure that if he aksed me I would help him with some kind of assisted suicide. He was and is afraid of losing control of that."
I am not sure what you meant by that. Could you elaborate?
Given a choice I would not like to opt for bipap if I could. But I don't know. It is easy to make statements now but I don't know how I will react to the need when it arises. I think I will discuss it soon with my son and wife.
If the moderators think that this kind of discussion in a open forum is too much then I request them to advise me.

 

[terri]

Hi Bob,

I'm a CALS to my husband, LB.

How does your wife do now accessing your needs? My guess is that the more you progress the more you will find that she will know your needs. I almost know what LB needs before he does.

I think it is smart to give thought about what you desire in the future in areas of vents and feeding tubes. Just remember if you opt out now you can change your mind. Just know the risk of delay. LB has, for now, opted not to get a feeding tube which he should do now if he is going to choose one. He understands that later may be too late. It's his decision. If he should change his mind later he will enter that decision knowing the risk. The bipap he is willing to give a try when the time comes. The vent is not being considered by him. Here in the U.S. we have Hospice. When things get too hard for him that is when we will call them and let them help him through the end of his journey. They have ways of stopping any pain. His faith and trust in God help him to not worry about today and have hope for a good tomorrow. What more can any of us ask for?

I hope you find peace in you decisions.

terri

 

[lunarruna]

I think this is fine stuff for discussion here on this forum. Yes, assisted suicide is not legal here in the US except in one state, Oregon. I confess that I am not all that informed on the issue as far as the subtlties and details. If I were to give my husband a requested drug overdose or something I would be in violation of the law. When he was so afraid about being 'trapped' in an unhappy condition he and I would have discussions about what we could do for me to help him without me getting in trouble. This may offend people but we had some very big laughs coming up with silly plans like me dragging him out in to a snowbank and leaving him..or he always had a funny fantasy about drifting off on a iceberg on the river (we live in a very cold climate)....in reality these were just that--fantasies, but it was an issue weighing heavily on him and it helped him to share his thoughts.
He quickly lost the ability to eat and got a feeding tube. We read up on some details about what it is like to die by stopping eating and my husband was really put him at ease. Now he knows that if he ever doesnt want to go on, he will tell me to stop feeding him and he can go that way. It has taken away all his anxieties about losing control over himself. Also, as I said before, he is much happier at this advanced stage of ALS than he ever would have guessed he would be--it is amazing what we adapt to. He is thankful for each day and hopes for many more.
This is just our personal experiences with this, I am sure many folks have stories and thoughts on the issue.
Later, Beth

 

[lunarruna]

Bob--One other thing...here is a group The Hemlock Society --that deals with 'compassion in end of life choices." I confess that I do not know much about them beyond their name, but maybe you can find some good info on their website..I suppose there are other groups too out there.
http://www.compassionandchoices.org/hemlock/

again, peace to you in finding the right path...Beth

 

[Al]

Bob your discussion is fine. If you started to sell suicide kits that would not be allowed but end of life decisions are not a taboo subject. Rather than assisted suicide I personally prefer to say my family or doctor would help me to not suffer.
AL.

 

[quadbliss]

In the early stages of my disease, I decided not to vent. As I progressed, I discovered each stage to be easier than I expected. I was actually enjoying my life more each day. I realize I am in the minority, but when the time came, the decision to vent was an obvious choice. I have now been vented for over two years, and I enjoy a fulfilling, rich life. You can check out my website for more details about my journey. It is definitely a personal decision, but it is possible to live a joyful life without the use of one's body.

Mike

 

[Al]

Don't take my last post to mean that I plan on checking out anytime soon. Nooo, you guys are gonna be stuck with me for a long time yet.
AL.

 

[Saubier]

Mike,

Your website is awesome! Have you encountered Evan Harris Walker? He is a former physicist, now operating a clinic in Maryland. He wrote "Quantum Consciousness," a difficult book, but comprehensible by nearly anyone. It is near the top of my list. It provides some scientific insights supporting your ideas.

Pappy

 

[quadbliss]

Hi Pappy,

No, I don't think I have read any Evan Walker, but I will look into it. Quantum Mechanics (the double slit experiment) got me started on my spiritual journey.

Mike