Don't Focus on Dying!

[bobkerry]

i personally believe that if we concentrate more on our age and start thinking that we will die then this can harm our lives very much...there are many people who are in relation with me and they are above 60's and living very well and are fighting to live longer too. so this is not that much hard. if you feel that you can live longer then you will not face any kind of problem or difficulty

 

[olly]

hi roadkill.
firstly i am so sorry if my post caused you any distress or pain and i apologise.
i know there are some pals like yourself who dont have a supportive family round them,i can not imagine anything worse when your dealing with als on your own.
a good pals friend of mine and sharonas called del was in a similar position and we with the help of other forum members tried to do what we could to help.
i feel you have been totally let down by your family and community.....i can not understand how people can be this way.
you know that you have a family and friends on the forum who do really care.
i hope and pray that when the time comes that you do need more care and help it will be found for you......we will try to help any way we can.
caroline

 

[RoadKill]

thank u to those of u who have been kind.

caroline, i know u were not trying to be hurtful. u seem like a caring person.

i don't have anyone 2 leave my pension death payout and life ins. to... can't do viatical settlement...

my friends signed up for friendship w an energetic, giving, healthy person. so, now i know.

 

[Chris_b]

Very interesting thread. I only got diagnosed fairly recently and have not got much of an idea of the aides that will be needed/helpfull in the future. The trache and vent for example sounds great if it could extend your life but i have no clue as to what that entails.
Ive been trying to learn as much as a can about this desease in the last month or so, although at first i didnt want to know what was coming! The problem seems to be that my girlfriend is still saying she will take things as they come and doesnt really want to talk about things we may need put in place. Should i be planning now for what lies ahead or am i wrong to do so? i just dont know.
Joel... i noticed in this thread someone commented on your daily procedure. I decided to have a look myself and wow that was an eyeopener. It made me realise just how difficult things can get for someone who have to care for me when i get to that stage, i dont think my girlfriend quite realises and will not look when i mentioned it.
I really cannont imagine how long i could go on like that with all the time and basically life taken away from my girlfriend (wife by that point as we get married in feb :smile

 

[joelc]

Chris, I know I am used to the condition I am in and have adjusted to it and so has my wife and caregivers but it is really not that bad. If I could talk it would be simple but I can't so had to make comprehensive procedures for caregiver to follow. It is not as bad as it seems.

Congratulations on your upcoming wedding!

Content Index

Have a look at all the postings I have on traches the look at "V" and read about vents. It should give you an idea what is involved. I have always been a supporter of getting everything in place before you need it, don't wait because it will be significantly harder at that point.

 

[flower]

hello everyone i now have trach and vent. In the first 3 or 4 weeks i hated what I had done. things happen every day to make me realize how glad i am alive especially my grandchildren . they see the tubes and say that what makes grandma breathe ,they even try to pop it back on if comes off. my grandaughter who is 4 told her come see my grandma she's nice. my husband who was overwhelmed is now feeling like a pro.
we even go riding around &. . are even talking about a road trip. we have not become perfect with it but things are looking much better. when the time comes for me to die nothing has change my savior will come and get,and i will go home with him. I am so glad I not in control of death
but the same savior that gave me life is. thank-you for listening ,

 

[Petey]

Greetings all,

My name is Pete and I was diagnosed with limb onset ALS in September although I've had symptoms for more than a year.

Saying ALS is a fatal disease is like saying that Leukemia is a fatal disease. Of course it is, unless you have a coronary or get hit by a bus first. My brother had Chronic Myelogenous Leukemia and was given 4 years to live. He lived 24. A friend of mine was diagnosed with ALS and told he had 18 months to 3 years. He's still alive at 14.

It's a question of quality of life. If you're not in intractable pain, if you can still entertain and challenge your mind, if your spirit still has wings, you can live a good number of years. Attitude isn't everything but it is a lot.

Blessings
Pete

 

[LizT]

flower- very glad to hear things are going so great for you and that your hubby is more comfortable. Good for you!
And Pete- welcome. Sorry you have to be here, but you have a great attitude and i agree with everything that you have said.

 

[TedH5]

Petey sorry for your diagnosis. Welcome to the forum, you will find a lot of great and caring people here. A wealth of knowledge, experience and concern for each other!

Stay strong and keep the faith!

 

[Phil M]

Everybody's situation is different. I'm not married, and don't have any blood related kids. All I have is my elderly folks, and my older sister. My care is going to be way over their heads. And something else I have to realize is....someday my folks, or sister might have the task of pulling my plug. I can't put that responsibility on their shoulders. Since it is basically killing me. I have been thinking about this lately, and the only way I would vent is if it sounds like stem cells, or others will be a sure thing within a couple years. Theirs just no way I could leave my loved ones with the guilt of ending my life. I secretly hope I choke to death in my sleep when my quality of life really starts to suck. I still give us hope, but won't let it turn into false hope. I am still positive for now. I just hate how long these trials, and the FDA takes! I have no doubts that stem cells can be used some day. Theoretically any body part can be made with them.

 

[NotALS!]

Joel C:
Could you post a list of your daily schedule and what your caretakers do to help you? Do you have insurance that covers the cost of your caregivers?

 

[joelc]

I get help from a special government program because our income is so low (we have a disability pension of $928.63 a month). We receive a fixed amount each month that we can only use to hire caregivers. We are our own employer and can hire who we want, we also have to take care of employee deductions, etc. But since I had my own businesses most of my life it was a natural thing for me to do.

I will give you a link to what my caregivers have to do every day. Morning takes between 30 to 45 minutes to get my up, cleaned, dressed and fed. Lunch takes 10 minutes. Supper takes 10 minutes. Bedtime takes another 15 to 20 minutes to get me ready and transferred into bed. A couple of times a day, max, I have to be suctioned taking a maximum of 5 minutes each time. I may have to pee twice for another 5 minutes each time. Two or three times a week I have a BM that will take a total of 15 to 30 minutes each time. Twice a week I have a shower so those mornings it takes close to 60 minutes. Add that all up and they have very little to do, but they have to be here just in case. The only other thing that has to be done once a week is cleaning and sterilizing my circuit (air hose) and a few inner cannulas which will take up to an hour.

They watch TV or use their laptop computers when they are not tending me. Very easy schedule and job.

When you read through the procedures you might feel a bit overwhelmed, please remember that I can't talk so have had to develop these so my caregivers know what to do and how I want things to be done. If I could talk then this would not have had to be done. It really is not as bad as it might seem. A lot of it is common sense in my opinion but I have not found caregivers with any.LOL.

Procedures

I welcome any further questions.

 

[NotALS!]

JoelC:
How do you type? Is there anyway for you to verbally communicate via computer? You are fortunate to have a loving family.

 

[joelc]

Computer - using it

There is a link on that page that takes you to another page that states how I communicate verbally.

Yes, I am fortunate that I have a wife who has not abandoned me. Everyone else has.

 

[scouse]

Hi
since I was diagnosed this year I have tried to be posotive I dont think about dying I get frustrated at not being able to speak as good as I did or use my hands the same especially when it is cold I tell myself I am lucky my progression is slow and I try to act and live as normal as possible
Befor I read this thread I was trying to decide wether to have an extension with bedroom and bathroom downstairs with eventually 24 hour care (i live alone) or to have a stair lift and a wet room instead of my bathroom and manage as long as I can and then go to a home/hospice I dont fancy living on my own depending on people coming in ,your thread gave me food for thought
Scouse