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Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,921
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
My PALS Krissy takes about an hour daily to use the Tobii eye-gaze-controlled computer that VA supplied. She surfs the net and reads email. Mostly, she constructs phrases for the speech synthesizer to say like: “Becca, I need you”, “I like that”, and “Move my leg, please.”

But frankly, we move her around too much to use the computer. She is rarely in one place more than 3 hours—the TV chair, the hospital bed, the power chair, the van, or a restaurant. Since it takes me maybe ten minutes to adjust the computer stand and calibrate the eyeball thingy.

Last week her voice became pretty useless—a combination of lack of breath and difficulty forming the words—so she made up some signals: a sniffly nose means “oxygen” and an open mouth means “Cough Assist” while puckered lips means “nebulizer.”

The VA dropped off about 1000 bottles of oxygen. And I’ve learned lately that too much O2 can result in increased CO2, but I really don’t know why yet.

Unfortunately Kris has been horizontal lately and on oxygen full time. Of course the cannula is useless if you’re mouth-breathing the whole time.

Yesterday she began to cry and said “My lungs are failing.” So I told the kids not to make a mess in the van, ‘cause we’ll be selling it soon.

“Paul” is a really good movie. The m@therf#cking language is not for kids, though.
 
Copied from Wright Good reason to "like" a comment, it makes it very easy to find!



"The reason PALS are not typically put on oxygen therapy revolves around what drives breathing.

In a healthy individual, the main drive to breathing is the build-up of carbon dioxide in the body (we rid the body of carbon dioxide by exhaling). In a PALS, breathing is labored and thus exhaling is not what it would be normally . . . and thus . . . there is a build-up of carbon dioxide in the body above what is normal. The body's drive to breathing is therefore "reset" to a higher level of carbon dioxide and thus causes the normal drive to breathing to be diminished.

The body compensates by using low levels of oxygen as a greater drive to breathing. Therefore, if a PALS is put on oxygen, the drive to breathing (now due in larger part to low oxygen levels) is diminished even further (because the supplemental oxygen increases oxygen levels in the body) and could cause respiratory arrest."
 
Mike- your detailed update is appreciated. I'm bummed that things are going the way they are for Krissy and your family. It's sad. I can only imagine what we will face as my PALS begins to fail as if it's the end. Your sense of humor will glide you through this approaching difficult time but don't forget to let your guard down. Hugs to you!
 
Mike - I love your sense of humor and I feel your pain.
 
Mike,
You are truly an Angel on earth. Give Krissy my love and tell her she is in my prayers.
Susan
 
Does she use a bipap? It's non-invasive and might make her feel better. If she's crying when she says her lungs are failing, perhaps she'd be open to using one?

Also, if y'all have an iPad, there is a free text to speech program called verbally--if she can use even one finger. There is also the SpeakBook that you can make that can save her air.

You're all dealing with a lot. O2 at 2lpm isn't enough to use a mask--and higher may cause the hypoxic problem. I'm glad you're doing things together and taking her out.

Take care
 
Well, it's pretty clear this can't go on too much longer. We got two hospice nurses here at midnight, who put some morphine in Kris, and they're going to stay here 24/7.

It's too bad this forum is dominated by women. Ya'll are probably gonna get all teary-eyed if I keep on writing. But there is a narcissistic part of me that says the world wants to hear what I have to say. And in my own self-important way, I think I'm doing the world a favor by telling you what's going on here.

For one thing, when Krissy mouthed the words, "I have air hunger," and began to cry, I knew that she meant, "It's time to die." So I called the nurse, who told me to open the sealed secret box in the refrigerator and get out the morphine. The nurse told me to give her some morphine, and I hesitated. My eyes felt a little pressure under them, which in a normal person might be construed as a tear forming.

I asked the nurse to have the doctor call me. In my mind I thought, 'we don't know if this is the end, or if there will be a few more days so Krissy's family can fly down if they want.' I simply wanted an answer to the question: am I going to kill her now?

And then I realized that the nurse on the phone had no idea what Krissy's ALS meant. Hey! If I'm going to kill my wife, I think at least one of us ought to make a considered, informed decision about it. So I asked again for the doctor to call.

An hour later, a nurse arrived and the doctor called.

I'll take a rest for a few minutes so you can go get a hanky. At two a.m. I wonder if anyone will see this until tomorrow, anyway.
 
I am awake here in NZ and hear you. I am not running for a hanky, but my heart is heavy for you both. I don't know what to say, just that I am listening. I cant begin to understand your pain. I cant understand Krissy's. I Can listen.
Love to you
Aly
 
I see your msg Atsgui, and though I didn't run for a hankjy I do feel sad in what you must be experienciing. Do you want to call me? Are you with people other then the nurse? I am glad they are at least there and also glad you questioned it. Your braver then I am, I k now I will someday have to face the same and it frieghtens me I won't be ready.
 
My husband isn't even close to what Krissy is living right now, and it made my gut tie up in knots when I read your update. I cannot imagine what you all are going through tonight. My thoughts and prayers are with you.
 
Well I've settled down and so has Krissy. The doc explained to me that a low dose of morphine would relax the bronchi but not diminish her breathing muscles.

Respiration rate was 52, heart rate 120 and blood pressure 150/80. Headache. Exhausted from trying to breathe all day.

Nurse used a syringe (no needle) to put 5mg under the tongue and in a couple of minutes Krissy seemed to breathe a little slower, but more deeply, using her chest muscles. Looked harder.

Ten minutes later, another dose. Kris says she felt a weird feeling, that her lungs "relaxed" and opened up. Much better. They will give her a dose every 4 hours to keep her breathing easy. I signed a form that says during this "Crisis Care" part of the hospice experience, we'll have nurses in the house 24/7, and I have to agree that an adult will be in the house the whole time.

Guess that means I can't go to work or drive my kids around. We'll be getting our meals from the Grub Taxi service.

This is God's way of making me clean the house.

Every day since diagnosis, I think about death. But I have never once shed a tear. I think my military mind is compartmentalized, and I can ignore the emotions. Instead, I budget for before and after death. I throw out stuff we'll never need in a post-Krissy world. I wonder what my next wife will look like. I plan to live on a boat. But I don't cry. I'm too busy.

This disease has generated sh1tl0ads of paperwork. Took weeks to put it all in separate binders.

I'll make sure I'm there to hold her hand and cradle her head when she turns cold.

If it's 4 AM on the East Coast, what time is it in Heaven?
 
You are amazing! Maybe you are crying by writing these words? Saying so many things that people may not be willing to write themselves. I know, cheesy, right? I'm reaching out from Maine to give you hugs. Stop rubbing your chest with mine, there will be plenty of opportunities to do that later. Geez ( wow, that was inapporiate or was it? )
 
I use to live on a boat, I loved it. Its anytime you want it to be in heavin, I think. I haven't cried concerning my mom, I'm sad and I think of life after at same time I can't stand the thought of her not here.

"Faith is not the absence of fear, but the willingness to go on when fear is present".

Perhaps the above is why.
 
Atsugi
You, Krissy and your children have been on my mind. Your post was the first I went to when I logged on this morning. You are brave to write about the end because I've worried about how I will handle it when my husband's time comes. Just know an entire community of people are thinking about you and your family. Krissy is lucky to have you.
 
HI Mike

I hope you both managed to get a little rest. And hopefully, the morphine will continue to make her comfortable. That's what's important now.

When my dad was dying, I resented not getting a call until it was too late for me to do more than go to his funeral--so perhaps a call to that out of area family would be in order. Closure is important for everyone--including Krissy.

Hugs

PS: I'm in Orlando. If you need an hour or two off to recoup--yell. I think I'm still an adult
 
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