Caregiver Needing a Night of Rest

rann

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Technically I'm writing this on my father's behalf. He is caregiver to my mother who was diagnosed with ALS.

Mom makes lots of moaning and groaning sounds at night. Dad is a light sleeper (always has been) and this wakes him up. Mom is unable to turn over or adjust herself, so she makes noise to alert dad to do X, Y, Z.

Last time I visited, my dad showed me how his sleep is on the Sleep Number phone app. He gets anywhere from 4-6 hours of sleep, which is not continuous by any means. He looks so tired. Approximately every hour he wakes to turn or adjust mom. He's also still working kind of full time. He's had to take a lot of time off from work as their last paid caregiver quit. I don't know any details on what happened. Their new caregiver hasn't started yet. They live in a rural area making it hard to get a caregiver. So far they only have been getting assistance in the day time.

Caregivers, what do you do to make sure you get decent sleep?
 

lgelb

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Many PALS can get several hours of sleep in a row with everything set up optimally. That would help your dad get more sleep.

When she wakes him up, what is he being asked to do? What hurts?

Things we talk about to make the consecutive hours of sleep happen include a hospital bed, a supportive pillow, a medical foam mattress, a latex or other foam overlay, elevating the head and feet by however many degrees is comfortable, pressure boots to "cut out" heels if needed, foam under knees/calves/elbows/forearms as needed, getting the room humidity/temp right, making sure BiPAP humidity and other settings work for the PALS...does she have a BiPAP? Feeding tube?

The more you can tell us about their setup (you could even post a pic with crops as needed), the more helpful we can be.

Finally, many PALS take various drugs to sleep more deeply, so long as that can be done without worsening breathing, though of course at the very end, we stop measuring those drugs. Is she on any meds like that? What is life like during the day?

Best,
Laurie
 

ecolon58

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My husband makes all those noises of moaning and groaning trying to roll over also. I work full-time and had to move to the bedroom next to him. I can still hear him sometimes during the night but I don't get up unless he calls me to urinate. I am now going to try the texas catheter so he can go without me. We are waiting on a hospital bed which should make it easier. When we get reevaluated I will request an overnight person. I have 2 aides during the day, 9-4 and 4:30-9:30. Works most of the time, but there are many times when they can't make it. We had to put him on medicaid to get aides. It's worth it, costs so much money paying out of pocket. It is important to get as much sleep as you can so you aren't cranky when you have to care for the other person, which is what happens, and especially if you work. It's not easy!
 

Thomas933

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Hello: My husband also wakes up a lot. I work full time and have 3 school-aged kids! Some things we do 1) use a portable urinal at night to avoid helping him to bathroom, 2) he sometimes takes sleep aides to sleep deeper. 3) I wear earbuds to lull his noise.

Also, check with ALSA Chapter.You should be able to get $2,500 in respite care to i I ay a caregiver to come into the home. This could give your dad a break.

I’d also see if you can find a neuro-palliative doc to help your mom sleep more soundly and comfortably so dad can rest.

good luck - they are lucky to have you. Sorry about your mom
 

rann

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Thank you all for the responses! I'm responding on my phone, so Im hoping I'm responding correctly.

Mom is asking to be turned or readjusted somehow. She also has a lot of joint pain day and night in hips and knees. This was somewhat improved on with the sleep number bed. No pain meds really seem to do much other than make her sleepy.

I'll try to get a picture next weekend. She has a small pillow that goes in between her knees.
She gets some nighttime meds but I dont know the details. It's difficult to keep up on all the detail as there's always new changes when I visit.

The weekday, daytime caregiver has started. I've told my dad they really need a second caregiver especially while he's working. He does retire at the end of this month.
 

JimInVA

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rann,

I remember existing through that very same scenario as your mom and dad. My wife, Darcey, would need to be turned every 1 to 1-1/2 hours throughout the night. Even though I was reasonably able to quickly go back to sleep, I was probably not entering that deep sleep stage. I'd move through the daylight hours feeling exhausted all the time... both physically and mentally. I didn't live through those days... I existed.

One day, I mentioned this sleep dilemma to Darcey's Respiratory Therapist. Fortunately for us, she is also our local ALS.ORG contact. She said, "Let me check the loaner closet to see if we have something that I think will help!" The next day, I got a call from someone at the loaner closet asking if they could deliver a "8" Low Pressure, Low Loss, Alternating Air Mattress" to us." The next day it was delivered.

That night, I asked Darcey if I could put the new mattress on her hospital bed. "No... not tonight", was her reply. This went on for a couple more days... each day with the same question followed by the same "not tonight" reply. One day, I didn't ask. Instead, I went upstairs into our bedroom, pulled off the existing thin mattress and strapped in the new 8" air mattress. That was the night that MY LIFE CHANGED SIGNIFICANTLY!

Darcey was surprised that I'd gone ahead and made the mattress change without asking. But it was on the bed, it was time to try and sleep so she just went with it. It was the first time in months that either of us had slept through the night. She slept for 8 straight hours... as did I. I've lost count of the times that we've looked back to that night. Again, it was life changing!!!

Darcey outlived the life of that first ALS Loaner Locker mattress... and I immediately purchased another. Darcey rarely wakes during the night. She sleeps so deeply and so soundly that she barely notices that I move her in the middle of the night. I'll get up once or twice during the night to use the toilet. Before I crawl back in bed, I'll raise the head of her bed fully upright. I'll then pull her arms forward (so that they're not anchor points for her upper torso), hold her at both shoulders and move her around a bit. Most nights, she doesn't even remember that I'd done so.

The alternating air mattress minimizes or eliminates the sore spots that can develop from sleeping in the same position for an extended amount of time. If I didn't move her around at least once during the night, she would wake with sore joints. The movement helps minimize that morning soreness.

I can't stress enough how life changing switching to this mattress was for us. I suspect that the experience might be different for each of us, but I can't imagine a scenario wherein one would not find better sleep. And when the PALS can sleep, so can the CALS. It is much easier to find things to laugh and smile for when one starts the day after a good, full nights sleep.

My best...

Jim
 

ARCG

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We use an adjustable bed with a firmer memory foam mattress, a boomerang pillow (he likes the way it’s supports the shoulders) and a pillow for his legs. I elevate his head just a little. The bed is on special 8 inch risers making it higher than normal. This has worked fine so far and he sleeps through the night most nights. No pressure points/sores or joint pain , we are in our 6th year. He did have some muscle pain last year, a physical therapist showed me some techniques to relieve the pain which I did before he went to sleep. He has little movement, we use a lift for all transfers. I agree, the cals really need a good nights sleep to face the tasks of the next day.
 

affected

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An alternating air mattress on a hospital bed was the life changer for us.
 

wmilo

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Hi, Jim. Your comments about the "8" Low Pressure, Low Loss, Alternating Air Mattress" caught my eye. Can you share any details such as a brand or model number?

Thanks,
Bill
 

JimInVA

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Bill,

I would be glad to... especially since I know there to be some knockoffs that are not what they are advertised to be. I was careful about placing my order with Amazon... down to making sure that I was getting the EXACT model number that I wanted. The order, through Amazon, was fulfilled by a 3rd party in Florida. Upon its arrival, I carefully opened the box but not the clear plastic it was encased in. I wanted to verify that it was actually as I'd ordered it. To my surprise and dismay, it was a different model number... one that had a lower maximum weight and a lesser warranty (even though from the same manufacturer).

I first began on the premise that it was an accidental mistake... that someone simply grabbed the wrong box. But when I could not get a reply from the Seller, I contacted Amazon. They contacted the Seller and suggested that they quit ignoring me. This resulted in my receipt of an email asking that I call the Seller directly. After several days of leaving messages with no return call, I again contacted Amazon. This resulted in a phone call from the Seller.

After apologizing profusely for there being an issue in the first place (such apology being implied as to cover every delay to that point in time), he said that it was an error at the warehouse. The person picking the item ordered had pulled a more expensive item from inventory... one the was much better than the one I'd ordered. He went on to say that he should issue a call tag for it so I could return it and get the one that I'd actually ordered. But, seeing as this had been their mistake, he'd take the loss and would allow me to keep the better and more expensive one that was actually shipped, instead.

I pointed out to him that the "better and more expensive one" was actually listed by him on Amazon at half the price of what I'd already paid. He then offered to refund me the difference. When I said that it wasn't the one that I wanted, he offered to sell me one of the "private brand" items that he'd just had a truck load of delivered. These, he said, were better than any model the original manufacturer made and I could have one for a minimal upward price adjustment to what I'd already paid. It was then that I asked that he simply issue a call tag and refund my purchase.

It was another week or so before enough time would pass that Amazon would force a call tag from the guy and have him issue an immediate refund. Fortunately, I would find the exact one that I wanted in an Amazon (as Seller and shipper) listing for less than the amount I initially had paid.

So... why take time to write so many details? My hope is that (1) folks will understand how important it is to specify what you want, (2) to verify that what you order is what you get and (3) to encourage our awesome moderators to allow my information to post through (they do one heck of a job at trying to keep links to a minimum so as to minimize the likelihood that we forum members aren't fleeced or taken advantage of... and I appreciate each and every one of them!!!).

In a moment, I'll research back to what it was that I ordered. It may take some time... and might even be tomorrow before I post. I'll ask the moderators to remove any portions of my next post that they believe needs to be removed.

Please recognize that I'm providing you the information of what we first had and what I replaced it with. Others make similar items that my be equal or better than what we've used. And, should you actually purchase something, I hope you'll find it as wonderful (and potentially life enhancing) as we did!

Again, my best...

Jim
 

JimInVA

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Bill,

Here is the information that you would need to find the one that we have...

Mfr: Drive Medical
Model #: 14029
Max Weight: 450 Pounds
Descriptive: Drive Medical Med Aire Low Air Loss Mattress Replacement System with Alarm, 8", Blue

The Model # of 14029 is what I felt was critical. It has a 450 pound maximum weight capacity versus 300 or 350 on the other one. One of the nice features of this in regards to max weight is that each of the inflatable "cells" is connected by a connection mechanism that will allow the cell (tube) to disconnect and deflate rather than to allow something to blow/break. I also allows for the ability to deflate any cell (tube) that you want.

The company that attempted to sell me a lesser version and then a "knockoff" was Medical Supply Company... though I'm sure they use multiple other names.

This is enough to allow you to find the one that we use. We paid $789.58 for the correct one. It is currently listed for $802.81.

I'm going to bypass a direct link for this as I believe I've given you enough information to find it. If I can answer any other questions, let me know! :)

My best...

Jim
 

wmilo

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Thanks, Jim, for the information. Sorry you had to go through so many hoops (although glad you eventually ended up with the one you wanted). Anything that a CALS describes as "life changing" is definitely worth a long look at. :)

Thanks again,
Bill
 
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