Old 01-09-2015, 07:15 AM #31 (permalink)
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Default Re: Wake up call and hard choices

Thank you, Heather!

So, a funny story about the bathroom... We've done a wet room shower area. The floor slopes to the center, and hubby decided that he wanted to check the slope yesterday. Turn on the water and let it run! It looked great at first, but eventually it rolled up the slight slope and spilled into the rest of the bathroom. Poor design? NO. The drain is still capped--one more thing the plumber needs to finish today (the house is on a slope so you can stand in the "crawl space" under the house where the plumbing is). I used every towel I could find to mop that mess up. LOL---this is why you WAIT until the contractor turns the room over to you
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Old 01-09-2015, 07:16 AM #32 (permalink)
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Default Re: Wake up call and hard choices

Quote:
Originally Posted by Nuts View Post
Thank you, Heather!

So, a funny story about the bathroom... We've done a wet room shower area. The floor slopes to the center, and hubby decided that he wanted to check the slope yesterday. Turn on the water and let it run! It looked great at first, but eventually it rolled up the slight slope and spilled into the rest of the bathroom. Poor design? NO. The drain is still capped--one more thing the plumber needs to finish today (the house is on a slope so you can stand in the "crawl space" under the house where the plumbing is). I used every towel I could find to mop that mess up. LOL---this is why you WAIT until the contractor turns the room over to you
OOPS!
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Old 01-10-2015, 04:46 PM #33 (permalink)
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Default Re: Wake up call and hard choices

Nuts, love you girl and that precious, generous husband of yours. Tillie, where would we be without your loving support?
I can totally relate, had my going on 50 yr old severely cerebral palsied daughter here with us for 10 days over Christmas holidays. 2 in wheel chairs (fortunately we had a transport chair), two showers, 2 to feed, 2 to help to bathrooms, 2 needing night help - both to get up to go to the bathroom so the wouldn't fall. Then I ended up having to drive her to her care home in LA as she was having severe seizures and we were afraid to put her on the plane. Fortunately my husband's sister could stay with him. But one night I was going back and forth between bedrooms to be sure both were o.k.
Then when I got her back to her care home, they gave her a 30 day notice as she requires a greater amount of care than her current home provides. That's when I finally cried! Will she end up in a home where she is well cared for? I worried about my husband the two nights I was gone but I had two solid nights sleep!
I remind myself that we'll figure it out. Nuts I'm so glad your sister is close to moms new home to help.
Big warm hugs!
Sherry
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Old 01-10-2015, 05:59 PM #34 (permalink)
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Default Re: Wake up call and hard choices

Oh Sherry, I don't know how you did it! Was there anyone else there helping you? Is there anyone else helping your daughter? I'll bet you did break down--I'm just shaking my head. I think the next time someone tells me that God only gives us what we can handle I'm going to scream!
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Old 01-10-2015, 06:06 PM #35 (permalink)
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Default Re: Wake up call and hard choices

Oh Sherry, I can't imagine the exhaustion you must have felt when they gave that notice. I so wish I had some answers, I just hope once you recover a little back home with 'only' one to look after, some of the issues for your daughters place to live will begin to show resolutions.

I know how it was when I had my brother here and that was only for a couple of weeks as it all fell apart so quickly for all of us. I can't imagine how you managed them both, except to know that somehow we just do.

2 nights of solid sleep was exactly what you needed. Is there any way your husbands sister can give you a little regular respite so you can sleep some nights?

Please keep us updated on your daughters situation xxx
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Old 01-11-2015, 10:36 PM #36 (permalink)
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Default Re: Wake up call and hard choices

Sherry, what a terrible thing to happen with your daughter! I hope that the home at least has some suggestions for where you can place her. my gosh--too much on you plate lady! thank goodness for your sister in law. and a two night sleep alone--Sweet!
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Old 01-14-2015, 02:49 PM #37 (permalink)
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Smile Re: Wake up call and hard choices

Well, we're three months post op and things are as close to normal as they have been in a very long time. After the trial over giving up driving that so many are familiar with, hand controls were put in the van yesterday. He can drive again! Let's hope the arms hold out for a long while. It's miserably cold and the ramp was a solit sheet of ice, but he wanted to celebrate by driving me to lunch, so I salted that baby and out we went. He rode the PWC right up into the van, locked in, and drove for the first time since October!

He's back to work (from home today) and delighted about it. I'm ready to sear the pot roast so that I can get it into the oven, but he's on a conference call in the living room, which has become his office. Because of his hearing aids he's on the speaker phone so dinner is on hold... This is the MOST WONDERFUL problem that I've had in such a long time! We share so many difficulties that I just wanted to share something happy. I just want to capture this day and put it into a snow globe so that I can take it out and shake it in the years to come.

ok...those guys can wrap up this call anytime now....
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Old 01-14-2015, 05:05 PM #38 (permalink)
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So pleased for you both.
Love Gem
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Old 01-14-2015, 06:06 PM #39 (permalink)
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Default Re: Wake up call and hard choices

wow Nuts, a couple of months back it didn't seem today would be truly possible, and now here you are!

I'm so thrilled for both of you - quality of life increased greatly for you both. I would definitely put it in that snow globe and onto the most treasured place on the mantle too!

It is so important to share the good stories here, we can all feel just a little uplifted together
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Old 01-14-2015, 08:43 PM #40 (permalink)
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So glad you have some good days to treasure and enjoy! That's what keeps you going!
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Old 01-15-2015, 10:06 AM #41 (permalink)
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Default Re: Wake up call and hard choices

That's great news about your husband driving to work. Every bit of independence our PALS can retain is a joy to see.
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Old 01-15-2015, 12:27 PM #42 (permalink)
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Default Re: Wake up call and hard choices

Nuts...I really like the sound of that snowglobe and I know I would shake the crap out of it.
Having a hard time remembering what my husband sounded like before ALS.
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Old 01-15-2015, 09:09 PM #43 (permalink)
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Default Re: Wake up call and hard choices

Andycap, I know what you mean. I use to have a phone in my office with my husband's voice leaving a message. I would listen to it all the time. wish I still had that phone.
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Old 01-23-2015, 05:31 PM #44 (permalink)
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Default Re: Wake up call and hard choices

Earlier this week the Trilogy was delivered for nightime use. Hubby's numbers were good when we went back to the clinic to have them checked, and I didn't get a positive response when I asked about checking him lying down, so I whipped out a recording of him sleeping. The RT's eyes got big and she said yep, that's clearly obstructive sleep apnea. Because of the ALS they were able to skip the sleep study and just order the Trilogy now. It's WONDERFUL! That busy little thing has both of us sleeping better. He handled it pretty well the first two nights but yanked it off at about 1 this morning. When he started snoring at about three he let me put it back on him and we were both able to go back to sleep.

As soon as the decision was made to put him on the Trilogy at night because of the SA, it was suggested that he might want to use it as sip and puff during the day if he gets sleepy. If his sitting up numbers were good (in the 80s), how much difference does it make to sip and puff during the day? If it helps, why wait for the numbers to go lower before offering it? Will using it at this point help slow loss of the diaphram, or just give more energy as it progresses?
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Old 01-23-2015, 05:46 PM #45 (permalink)
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Default Re: Wake up call and hard choices

The studies apparently show that using bipap early gives far more effect than waiting until breathing is very low.

I don't know that it prolongs life for our PALS by a large amount, but I do know that it improves the quality of life enormously.

If a PALS is having trouble breathing this is going to have to impact on every other area of progression - they will have less energy, walking will be harder, falls more likely due to the extra fatigue and being less focused. You know how much harder everything is if you are really tired, so add that to trying to use wasted and/or spastic muscles.

So the more you can help the breathing, the better the quality they will have, and maybe affect progression by being safer and having oxygen saturated muscles rather than CO2 saturated ones.

I would go the sip and puff!

This is where Chris always wanted everything only when there was no other option. So he was emaciated and dehydrated and barely consuming any calories by the time he took the peg. The peg never helped him that much as a result.
He finally requested bipap only 2.5 weeks before he passed, after a pneumonia. Too late and we had to abandon even considering it.

So go early for everything, it will give better quality at the least!

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