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Atsugi

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Joined
Jan 11, 2011
Messages
5,921
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Next stage is here already. Bummer. On the other hand…I see some silver linings.

Krissy’s final finger has lost its last muscle, so I feed her every bite and hold her straws for every sip. Thank goodness for bent spoons, fat forks and 24-inch long straws. We look like quite a curiosity in restaurants, using our own spill-resistant dish and the blue Dysem material that prevents dishes from sliding around the table.

Krissy’s brother and sisters are here from way up north, visiting, laughing and joking. Glad to see they’ll have a good final image of her to remember.

I finally got coordinated wiping her private parts from front-to-back after toileting, and we learned that the toilet reservoir sprang a leak because I kept running the rolling toilet chair into it.

The kids don't look relaxed in the back seat of the Braun-modified Honda Odyssey, so they lay on the floor and wrestle while I drive. On the plus side, this ALS has brought the kids even closer together.

On the brighter side, when Krissy is no longer with us, I can sell the van and get a BMW-Z4 convertable 2-seater.

We discovered that Zyrtec comes in crushable form, and found that it’s the cinnamon, not just the sugar, in apple sauce that helps the medicine taste not-so-bad.

But the CoughAssist machine is a consternation. It brings up phlegm, but then it just hangs mid-throat for hours, and Krissy gets red and hoarse trying to cough it up.

Also, she often can’t hold her head up. Thank the Lord that the kids can be with her all afternoon after the HH aide leaves while I’m still at work.

(Better get those Advance Directives signed and notarized soon.)
 
HI

She needs a neck brace, hon. It will help her with her head and prevent strain/pain in her neck. The headmaster and Shanes Brace are just two. You might consider a bidet on your toilet if she's able to be transferred to a toilet without too much difficulty. Would give her the privacy she seems to want based on your other thread.

If she still has her voice--has she considered doing some voice work so she can communicate with you and the kids in her own voice? Voice banking--that's the term I was trying to remember.

Does she have the eye-gaze computer setup?

Definitely get all that advance directive stuff in place that she wants. If she wants a PEG, it's better to get it sooner than needed than waiting til it's more of a risk--(she can still eat even with a PEG)

Sounds like you're trying to keep your spirits up--which will be good for her and for the kids--as hard as I'm sure this must all be for you all.
 
I second the bidet and neck brace.

Sounds like you are a very organized fella! I'm sure your wife appreciates all your efforts.
 
Fran often lies on the floor of our wheelchair van while our son drives, especially on long trips. That back seat is really uncomfortable. (Dodge Caravan)
 
THANKS notme and brooksea. I'll get the head brace prescribed and buy the bidet, but she's already nixed any tubes.

Wish we had done the voice banking. Perhaps with some effort, she could still do some.

We have the eye-gaze computer, and we'll set it up next week.

As always, we're one step behind this disease.
 
Get one step ahead of this disease. As a veteran, this is absolutely possible. You should have a suction machine to use with the cough assist. Talk to Krissy again about the PEG. My husband won't use it for feeding, but we do use it for medication. Makes it so much easier and his life so much more comfortable. As for the neck brace, the equipment issued by the VA is horrible. Go to ShanesBrace . com and order it. I'm trying to get this brace entered into the VA system. If transferring her to the toilet seat doesn't work, raise the toilet chair. If you don't have the etac chair mobile tilt shower/commode chair, get your doctor to prescribe it. We now use it for everything ~ toilet, shower and transfers in the house. It is fantastic. Really encourage Krissy to use the Dynavox with eyegaze. It will make all of the difference in the world in her ability to communicate with you and the children.

It really is possible to get one step ahead of this disease. The people on this forum have been invaluable in helping me do that. So far, so good. I think the only thing left for us to get is the 02 on my husband's BiPap. That should make him more comfortable. Good luck to you.
 
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