What is considered Final Stages?

[joelc]

I agree - Thelma that was very nicely said, I only wish more people felt that way. Maybe they will after reading your words!

Thank you Al for once again presenting our faith so well.

 

[SMillheiser]

To: Mt pockets

"Just goes to show each of us is so unique in our own way. My feet have been blue, almost black for over a year, yet I am hanging on. The nurses from Hospice keep giving me fits for getting on my computer , because I sit with my legs down and the blood and fluids pool in my feet, which cause extreme swelling. Since I cannot find a way to get to the forum any other way, my feet will just have to suffer for now.
Some things are more important to me."

AL.... IT SOUNDS LIKE YOU NEED A LAPTOP SO YOU DON'T HAVE TO SIT. LET ME HELP YOU WITH THIS...... STU

 

[MtPockets]

Thanks so much for the offer of help Stu.You do not know how much of a blessing you are and have been to members here on the forum.
I am still trying work out just what I need. I have to have the speech capability, internet, and maybe eye gaze, due to fingers and hands getting worse. At the rate they are deteriorating, I may have 6 months before lose use of hands.

 

[DgtofTNfan]

Capt Al,

The Dynavox that my Dad has on order has the capabilities that you mentioned. The eye gaze would be an upgrade if/when needed. It can also be mounted on his wheelchair which has the leg elevating capability so maybe you can get your technology coordinated so the nurses will be happy and you can surf the internet as you please.

Also the power wheelchair guy just coordinated for another PALS with speech therapist the ability of the joystick of the wheelchair to toggle through to use the Dynavox. Not sure how it all works as we don't have Dads speech device yet but thought that might help for decline in hand function.
Dana

 

[MtPockets]

Thanks somuch. Please let me know the details when you get it all working. There are so many different ones out there. Ijust want to be sure I get one that will work for me.
Happy July 4 everyone.

 

[SunshineTee]

Mare,

thank you for your thoughts. My dad has had ALS since 2008 and it seems to be now he is in his final stages. Sleeping a lot, uncomfortable without oxygen, very weak and has no energy - He still gets feeds through feeding tube - but no movement from shoulders down. He can move his head sideways and up and down but that's it - minimal to no speach just a little mumble and I just wonder how long this stage would last.

In the past week he has changed in apperance and is sleeping all the time - My mom and i even tried to wake him up and it took 15 minutes of shaking him - Things seem to be coming to an end - but I don't feel ready - and just want a time line to prepare

 

[handinhand]

How touching it is to read such personal and heartfelt stories from all of you.. Thanks for opening up the door and sharring with us. I just worry so much about my kids and i want them to understand like what Al said . I believe we are only going on for an eternal journey... Where we will be happy and whole and never to feel pain again. When the time comes for me to go I hope my kids will be conforted by this... and i don't plan on being that far away from them ever.... L

 

[MtPockets]

Re: Everyone has to die of something, sometime.

Thought I would bump this up since new members may not have seen it. You can now see more pics of my blue feet click on my name and pics.

Just goes to show each of us is so unique in our own way. My feet have been blue, almost black for over a year, yet I am hanging on. The nurses from Hospice keep giving me fits for getting on my computer , because I sit with my legs down and the blood and fluids pool in my feet, which cause extreme swelling. Since I cannot find a way to get to the forum any other way, my feet will just have to suffer for now.
Some things are more important to me.:roll:

I have no idea when the end will come, but I look so much for it to be be over and to go and be with my Lord and Saviour Jesus Christ, family, and friends who have gone on before. God is the only one who can punch my time card. Until then I fight for reaching out to others to bring them some little bit of comfort if I can somehow. When I am finally gone, please rejoice and be happy for me, that the suffering is finally over. It is more like a graduation exercise for me.

Just a weird thought, which I am known for from time to time,

EVERYONE HAS TO DIE OF SOMETHING, SOMETIME.

At least we have time to prepare, to get our affairs in order, visit friends and family, and make any unfinished business right before the end. Please, do not pass on with unforgivingness, resentment, or bitterness in your heart toward others. Now is the time for peace and forgiveness. Eternity, is a long time to leave things unresolved.

This reminds me of a song we use to sing in church which I cannot remember the words to but goes something like this,
My peace I leave with you, my peace I give to you. Not as the world giveth , give I unto you. Don't let your heart be trouble, don't let it be afraid, My peace I leave with you.

Just found the scripture but really like the song,

John 14: 27
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

I feel so small in the presence of God.

 

[handinhand]

Cap. Al, You are so good for the soul... I just love to read everything you write. I am so happy that i can get on here each day and know you are here..smile! Hugs, linda

 

[pepsiman]

Capt. Al,
The Dynavox Liz had did everything you need, internet, eye gaze and speech. Wouldn't wash the dishes though. The internet piece cost extra but it was only $55 to open it up. It's just a Windows XP machine with the Dynavox software added on. You send them the $55 (medicare and most insurances won't pay for that piece, say they don't want to be in the business of buying laptops for people) and they send you a CD to unlock it. I thought it was funny that they would pay $18,000 for a "communications device" but not spring for the extra $55 to allow it to be used as a computer (maybe this should be in the Financial Disclosures thread.....). Just like the Cadillac thread though the system is waaaaaay overpriced. It's basically a $1500 ruggedized touchscreen laptop with some specialized software and the eyegaze hardware. The system should cost maybe $2000 but since insurance pays for them they cost almost 10 times as much.
And just to get back on the topic of the thread:
Liz never really displayed any of the expected "end stage" actions. She didn't sleep any more than she had been all along. She didn't stop the feedings. She displayed the blue and swollen feet for months before she passed. The only change was, two days before she died her lips swelled up. In retrospect, some of the things I read in the hospice literature did come to pass. She was extremely agitated and restless the night before. She was also afraid to be left alone, even for only a couple of minutes. At the time I didn't read anything into it. Only later did I realize just how unlike her those actions were. I was actually very surprised when she died, I really didn't see it coming at all.

 

[KinzaDAF]

I believe my father to be in the final stages. He is asleep most of the time, only "coming to" for brief periods, where his eyes are open and he may give a small wave at family before drifting back away from us. He gets very restless and pulls off his BiPap ( and oxygen ) mask or manages to disconnect the tubing. He keeps a death grip on the bedrail most of the time, making it difficult to move him up in bed or whatever. ( We have to use force to pry his hands from their grip. ) He pulls at his tubing when he is restless. He doesn't speak, and only rarely communicates yes or no by squeezing our hands. His breath sounds are very diminished and one of the hospice nurses said it is getting slowly worse. Stomach contents were coming out of his mouth for a while. The hospice nurses say the "core" ( heart, brain, lungs ) are being cared for by the body but that the stomach just isn't a priority now, so food is digesting more slowly. While we ate dinner the other night Dad pushed his mask off and when we went into the room after dinner to check on him, found his ears and lips had turned blue. Everything is just going downhill and it seems at a rapid rate.

Debbie

 

[MtPockets]

So sorry to hear that Debbie. At least since he is sleeping a lot maybe he is not suffering as much. I pray peace for you, him, and the family as this progresses.

 

[hopeful warrior]

I've missed you, Capt. Al! It is great to hear from you. Your post was so comforting and genuine. You are amazing.
STU~ Once again, you are Johny on the spot and forever giving. I love this forum!

 

[BarryG]

Debbie, I am sorry about your dad. Take care

 

[thelma313]

Oh Debbie, it sounds like my dad and your dad are at very similar stages. I know your pain and we both know there is not much that can be said at a time like this. I never imagined such emotional torment and I am sure you know what I mean. My dad is totally locked in now. He can only move his eyelids and all we can do is show him love during the brief times that he is awake.

You and your family are in my thoughts and prayers. At least we know that we're not alone. My heart goes out to you.
Rosella