Old 09-13-2017, 03:28 PM #76 (permalink)
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Default Re: Overwhelmed

Yes, Sooner, automated tools can miss weak beats.

Sue, I think it's totally clear [except perhaps in textbooks!] that ALS affects all volitional muscle movement, including pushing for BMs. And the tracheal/esophageal/gastric motion changes that some experience could also affect things downstream.
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Old 09-13-2017, 03:45 PM #77 (permalink)
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Default Re: Overwhelmed

Upper arm auto bp cup. I am glad it was inaccurate, made my heart skip a beat.
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Old 09-13-2017, 03:58 PM #78 (permalink)
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Default Re: Overwhelmed

All the medical technology is good BUT relying on it without checking is a trap as technology can fail/falter for so many reasons.

I think hospice could be really helpful for you both now with all the changes happening.

Make a list of your needs before you start talking to them - treat it like they are applying to you for a job, not that you are applying to them.

I so hate this disease xxx
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Old 09-13-2017, 05:34 PM #79 (permalink)
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Default Re: Overwhelmed

Sooner - big hugs. I'm happy the doppler and urine were ok. That's really good news. As to the suggestion for hospice, I clearly remember the clinic visit when our Neuro talked to Brian about what his thoughts were on venting and it was time to consider that, then pulling me aside to tell me he has to decide quick, as he could go at anytime. I'll never, ever forget that visit, and I have a feeling you'll never forget this one since hospice was mentioned.

As Tillie mentions it should be good to have Hospice on board for some help.

Hugs,

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Old 09-13-2017, 10:11 PM #80 (permalink)
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Default Re: Overwhelmed

Quote:
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- treat it like they are applying to you for a job, not that you are applying to them.
Such great advice!

It's hard to hear a doc recommend hospice, but it sounds like they could really help at this point. (We're about there ourselves.) Hope you find a good fit for you and Cliff.
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Old 09-14-2017, 12:24 AM #81 (permalink)
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Default Re: Overwhelmed

We may be opting for a hospice referral sometime in the near future as well. Can't hurt / would probably help. From what I understand you can choose to cancel hospice at anytime and then go back on, etc. So, it's not like you are stuck with it and there is no alternative/no return.

In the meantime I am going to request skilled home health for OT services at the bare minimum, to come several times per week for AAROM exercises for Dave's arms and especially stretcing for his hands and shoulders. I could do this, but I am up for learning new techniques from an OT!

Regarding the bowel issues, the intestines are controlled by "smooth muscle" / involuntary muscles, but as we all know, certain parts are not (think of when you have REALLY had to go RIGHT NOW!!) - so the anus and muscles that help to "bear down" are not smooth muscle. People who have had a lifelong problem with constipation must surely have a big problem when ALS is added on-top of it all.
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Old 09-14-2017, 12:57 AM #82 (permalink)
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Default Re: Overwhelmed

ALS affects some "involuntary" muscles in some people, as seen in the airway/gastrointestinal/eye issues that some have. Note: most hospices will not provide OT or PT often if at all, so don't expect the regimen you're going for to continue under hospice and time accordingly.
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Old 09-14-2017, 11:51 AM #83 (permalink)
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Default Re: Overwhelmed

Sooner, it seems like progression keeps us ever fighting to figure out how to deal with new issues.

He's a suggestion on the BM's. We are now at the point that if Matt is in bed, I just roll him on his side (pads under him), place a curved sided bed pan next to his backside, and when he goes I make sure it lands in the bucket. Gloves help (sometimes now I have to pull out the hard pieces), and it's good to keep toliet paper within reach so I can clean him between "appearances". I also administer enemas in this position. If you have a day when your hubby is going that often, it might be easiest on both if he stays in bed an you just roll him to poop.

Speaking of which, today is a down day from hunting, but it's poop party day. Oh lucky me....

Big hugs to you.

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Old 09-14-2017, 09:25 PM #84 (permalink)
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Thanks for all the good info guys!

Last night our internet provider brought me a new modem and took the old one. My DD hooked it up and spent 1 1/2 hrs on the phone with tech support when it didn't work. They sent a repairman out this morning. It was a bad modem. Par for the course.

After the internet was fixed, I spent some time working and had some things I was concerned about checked out at the rent house.

This evening, I was going to meet the volunteer here in town for her to pick up our dog Cash to be fixed since she wasn't in he first place. I was backing out of the driveway when the drugstore showed up to made a delivery of meds. I jumped out of the car to sign and grab them, went back to the car and guess what? The door was locked with my dog inside... Luckily, it was running with the a/c on. I called AAA who was supposed to come within 30 minutes. I watched her through the window as she found a starburst candy in the center console and then a peppermint... Then she proceeds to get in my purse and pull out a bag of almonds, lol! The lady from the drugstore went to the store where I was supposed to meet the volunteer and told her what had happened. She also led the volunteer to my home so she could get the dog after AAA showed up 45 minutes later.

Just another fun event for the week.

Cliff napped today from 2-5. Then stayed in bed and watched tv for a couple of hours. Then night meds and back to sleep. This seems to be the new normal. I guess it probably helps with the swelling in the legs and feet. He is basically completely immobile now.

I spoke with him this morning about him not wanting me to use the hoyer. He said he just didn't like it but didn't have any specific reason but then agreed that he would start allowing me to use it.

I really do hate this disease and what it has taken from him and us..

I will let you all know when I get started on interviewing perspective hospice agencies.
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Old 09-14-2017, 10:42 PM #85 (permalink)
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Default Re: Overwhelmed

Sooner I'm so sorry about the car incident, but so thankful the drugstore delivery person help you out. It seems when it rains it pours. I hope in the next couple of days you can finally catch a break.

I'm sorry to hear Cliff is spending most of his day I bed now. Since he's mostly immobile, try to make sure he's changing positions as much as he can tolerate, that will help keep his skin healthy.

Huge hugs as you adapt to the new changes.

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Old 09-15-2017, 02:18 AM #86 (permalink)
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Default Re: Overwhelmed

Wow one thing after another - it often seems that the more goes wrong the more can and does keep going wrong doesn't it?

I hope Cliff adjusts to the hoyer - funny that was the one piece of equipment Chris actually appreciated!
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Old 09-15-2017, 08:25 AM #87 (permalink)
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Yes, it seems like it has definitely been pouring here lately.

What kind of mattress should I get to help eliminate the risk of pressure sores?

He let me use the hoyer this morning with no resistance.
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Old 09-15-2017, 09:54 AM #88 (permalink)
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Default Re: Overwhelmed

We are using a Low Pressure Alternating Air Mattress. With it, Darcey can sleep through the night without turning (though I do move her when I make middle of the night potty runs for myself). She has never had a pressure sore or anything approaching it. Ours was loaned to use by our local ALS ORG group from their loaner closet. It made the difference of Darcey waking every 60 - 90 minutes and needing to be turned versus sleeping through the night. Good sleep is important to both CALS and PALS. PM me if you need help or have questions and I'll be glad to provide you some links to follow.

My best...

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Old 09-15-2017, 02:49 PM #89 (permalink)
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Default Re: Overwhelmed

Whilst there are a very few who speak against them, the alternating air mattress we had was incredible. Ours had a very quite motor, and I lay on it occasionally as we had it in the lounge room and his recliner was also in there, and it was quite lovely!

Chris loved the ROHO to sit on but not the ROHO mattress as it made him very hot.

I'm so glad he let you use the hoyer because you will become really proficient with it too if you get to practice!
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Old 09-15-2017, 03:40 PM #90 (permalink)
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Default Re: Overwhelmed

On the alternating pressure mattress, I bought Brian one that was a topper to his regular mattress. He said he could not notice a difference. The only issue we had was the one I bought had rows of sorts and opposite rows would be inflated then it would switch. For us, the switching moved Brian down the bed, then i'd have to pull him back up again. Finally I took it back off. He didn't have pressure sores either way, but did get "brush burns" sort of when I had to keep pulling him up (this was pre-hoyer). However, getting a sling under a lying immobile person takes rolling them or alternative measures and for me, was still hard on my body, so we took it off. Just our experience. Maybe it was how ours was made.

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