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DreamsEnd

Distinguished member
Joined
Jan 24, 2014
Messages
449
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
AZ
City
Cottonwood
:sad:
I am at a total loss. My PALS does very well during the day, although he can't use arms or hands so I do everything for him, but he's sweet, funny, accepting and polite. At night it's as if I have a different husband. We are NOT getting any sleep and I am at the end of my rope. This has been going on for months but getting worse. He needs help anywhere from 3-8 times a night and the reasons keep changing! It was frequent urination so we got Detrol then condom caths. Then in his top of the line hospital bed (moved there next to mine because of restless sleep) he can't get comfortable (feels trapped or shoulder/hip pain) so he's been sleeping in his recliner. Bipap not comfortable - finally got settings changed! Mouth too dry, leg spasms, too hot, too cold, Got backlofen for spasms, Tylenol PM for sleep, Celebrex for pain. Then last night it was "as if a nail was being driven up his tailbone" so back to bed. Maybe for an hour. He hurt everywhere, dry mouth, could handle bipap for only a few hours at beginning of night. In hospital bed, he couldn't get comfortable, so back to chair after about half and hour. He whines the whole time at night, it's like an overtired 4 year old. Never during the day.

Help? Suggestions? Home health nurse on vacation. Respite only available during the day, it's nights that I/we need the help. Sorry this is so rambling - I'm exhausted, lost 10 lbs I can't aford to lose and my BP thru the roof.

Sherry
 
Have u tried your als clinic people? It could be anxiety or any number of things. Sounds like its time for a visit to the neuro. Or you could enter him in smoochielegal's pals swap;)
 
Sherry what a waking nightmare :(

Does the hospital bed have an alternating air mattress? Does it have the functions to turn him regularly? I know some CALS here have reported a lot of success with them.

I think he needs to be assessed too, have you discussed with the neurologist or clinic staff? I know they may not quite understand the urgency of addressing the need for sleep.

My Chris started sleeping through for the first time in 18 months once he went on antidepressants. Before that he was similar and up and down all night with one thing or another.
 
Sounds like he is not entering deep sleep enough and so lots of sensory complaints are breaking through when he is too tired to be polite. Just as we seek immersion in a wheelchair cushion, so that should be in the bed, so the body can settle in for sleep. Nor should tolerating BiPAP be an issue -- he should love it and fall asleep. So my leading recommendations are:

A good-density foam overlay (egg crate or smooth depending on how he sleeps), pillows that redistribute pressure from all major pressure points: elbows, knees, hips, heels; the right structured pillow for neck/shoulder support, reconsidering room temp/ventilation (the BiPAP is still drawing from the rm), re-evaluate settings to ensure they are not causing microarousals/are providing enough but not too much resp support; check the comfort of his headgear/mask (no dents, no red spots, major leak flareups)...OK, I'll stop here. When he lies down, I'd really just start with "What's uncomfortable or about to be?" and go from there.
 
oh my gosh sherry, that sounds terrible. have you talked to him about it during the day when he is feeling ok? I agree you need to call the doc and explain what is going on, and Laurie had some good ideas too. really focus on how to make him the most comfortable that is possible.

have you thought about hiring a nighttime caregiver for just a couple of nights a week so you can get some sleep? Now, I can give you that advice but I also have problems with getting hubby comfortable and asleep--but not as bad a you have it. poor guy. poor you.
 
Your situation sounds exactly like mine. My husband and I are sleep-deprived zombies, and it's not a good situation. Jamie is almost completely paralyzed now. He needs constant attention during the day, and I was getting to the point I couldn't function for lack of sleep. He has a top-of-the-line hospital bed. Sometimes I have nightmares about what it must be like for him, unable to move. Unable to shift his position. Unable to scratch. Feeling his limbs go dead from lack of movement. Even so, it was hell for me to be constantly up and down trying to help him, especially when what I was doing rarely seemed to help.

He was really reluctant to have us sleeping in separate rooms, but I don't function without sleep. (Who does?) Finally it became clear couldn't continue like this. And it got to the point I couldn't physically handle my big, strapping, former football player husband. Recently, we have caregivers who come in at night (we pay, because there is no reimbursement from insurance or medicare for this kind of help), so I have moved into the guest room.

But even the professionals can't seem to get him comfortable. We've tried muscle-relaxers, Ambien.... He isn't using a bipap yet, but that is next on the agenda. I wish I could give you some helpful tips, just as I was hoping I'd find some here. But I can at least tell you that you're not alone. Although I know that is scant comfort under the circumstances.
 
Sherry, my hubby went through a similar phase a couple years ago. He could still turn in bed by himself, but he complained about discomfort that he couldn't quite describe. It may have something to do with spasticity and twitching. The ALS clinic suggested increasing his baclofen dosage, but he did not like that because he said his legs felt like jello when he stood up (with help of course). He did not want to take any sleep meds, so that did not help. It lasted about 2 or 3 months.
 
Dear Ones,
Thank you for your loving and helpful replies. On Friday morning I called his Neuro (ALS specialist) in Phoenix and his coordinator cked w/doc who said you have all the right meds and we'll try one other (something starting with an A or an O) but we can't fax it, we have to mail it. I called our home health co provided by VA to see if I could hire private duty nurse but they have none with ALS experience. So then I called our wonderful social worker at the SCI Clinic at the VA Hospital. She worked her magic to get dear husband into 5 day in hospital respite with goal to get his breathing working and pain under control with mild doses of morphine. Had him here by 12:15 pm and an army of caring folks met us. This is 1.5 hours away from home.
Today Bipap driving air into his stomach. He's doped up morphine and is vaguely here, confused and drifty but pain free.
We have quite a way to go if I'm going to be able to get him home by Wednesday. If not we'll have to admit him for hospice care here.
AZMujer, might it be time for hospice care for your husband?
Laurie, saw your pm, will call you when I can.
The smarty respiratory "expert" came by yesterday and said settings wow as low as they could go and "you know it's only going to get worse don't you?" Duh! B|[€#!
I did get a good nights sleep last night and hope I can pick up my Zoloft prescription tomorrow.
Had to get my Subaru Outback back from SIL to drive today as high winds and possible snow if not heavy rain predicted because our van gets pushed all over in winds. All four tires air pressure light was on and tires ranged from 19, 22, 25 and 27 - should have been 32 on front and 30 on back. She says, oh the light just came on yesterday! Riiiiight.
Still cranky I am.
Sherry
 
Ps we do have an alternating mattress on the hospital bed at home but it "traps" him he says. Yes, I get him comfortable every time with all kinds of adjustments but anywhere from 10 minutes to an hour later it's no good. Hoping this is a stage we're going thru!

Sherry
 
My confidence that these issues can usually be overcome and everyone can sleep is based on five years of ALS, with someone who was never a great sleeper due to nightmares and night terrors (that included jumping out of bed and hitting his head, back when he could) and who had two subluxated shoulders almost from diagnosis (flail arm subtype).

Larry didn't have an alternating pressure overlay or mattress, nor sleeping pills like Ambien nor an antidepressant, but he only slept in his wheelchair a handful of nights over the years, when he was having uncontrolled coughing due to a mucus plug. The rest of the time we were good with the setup I've described earlier and I slept in the same room. I know a number of people here do likewise.

So if everything fails, of course CALS have to do what you have to do to sleep, but I'd suggest that breathing and pressure point relief (including the back and hips) are key to the best shot for P/CALS sleeping in harmony. The body wants/needs to sleep. But I could also see where the PALS' subconscious fears if the CALS is not in the room could work against that as well. So that is why I would try all else first.

Sherry, hope the respite works out and you can work out something for home -- I'm here whenever you want to talk.
 
Sherry, how did last night go? Did you get some sleep? How about your husband? Is he being well tended? Since this is a "respite" stay, are you able to leave the hospital and get some rest? I'm praying that you both get a break and are able to recharge. Hugs.
Becky
 
I am so glad you got some help, Sherry, and that your husband is getting help as well. And I hope you're taking advantage of getting some sleep. Nothing can change your outlook like a good night's sleep.

To answer your question, we are tapped into the hospice system through an organization called Hospice of the Valley, based in Phoenix. The organization also provides palliative care services (assigning a nurse and a social worker to you) and is our main source of finding reliable, caring certified nursing assistants who can give us the help we need, which right now is getting Jamie into bed, helping him during the night, and his morning routine — getting up, range of motion, toileting, showering, shaving and dressing. I don't know if they provide services in Cottonwood, but you might have another hospice organization that does.

We feel strongly about keeping my PALS at home. He wants to die at home. Although he is paralyzed, he's still breathing on his own (although its compromised. We're waiting on a bipap) and can talk, chew and swallow. But when he is ready for hospice services, hopefully a long way off, our intention is to receive them at home.

Please keep us informed. And if you ever need anything while you're in Phoenix, even just someone to talk to, let me know via this forum.
 
Wow, this has been a hard time but today (Monday) my sweetie is doing better. He was nauseated ( vomiting) all weekend from the low dose morphine but sleeping a lot and pain free. So they are switching him to a Fentanol (?sp) patch and our Angel Social Worker came over this morning as he is still not using the bipap at lowest setting. She is calling the head of respiratory to come over today and insisted they stay and watch him using it and see his difficulty. No one has ever done that!
I did get three nights sleep and frankly I need more! Tonight will do it I'm sure. I had to leave Prescott at 1:15 as heavy snow there and I didn't want to have a tough 1.5 hour drive home. Sweetie was worried about me too.

Gotta feed the fur kids.
Sherry
I so appreciate your advice and support on here and I will be calling.
 
He called me to bust him out of there yesterday. He was on the same floor and section as the Hospice as was treated as such. He vomited for the whole 5 days, was gorked out, no stool softener or laxative was ordered with the morphine or fentanyl. Many, many people can't tolerate opiates. He was severely dehydrated and had told them so on Monday and asked for an IV fluids which he never received. They kept giving him fluids orally and in his peg which he would promptly throw up. They gave him oral meds for nausea and finally injections. His Trilogy was connected wrong, no wonder he couldn't tolerate it and try to put a mask on when you're nauseated and vomiting. The social worker had called me on Tuesday to tell me she wanted to talk to him about being admitted to hospice rather than respite as he "was declining so rapidly". It might be too strong to say they were killing him but I think we've turned the corner with his home care nurse's guidance. He's lost a lot of weight in these 5 days of respite. I think there were very caring staff there but they were over their heads and were helping him die not live with ALS until it's time!
He was only up once last night and is still sleeping WITHOUT OPIATES this morning. Gotta go get a cup of coffee and then continue attempting to get fluids in and other stuff out.

Sherry
 
Crap. So much for respite stays. How do they help if you have to stay with our PALS in order to be sure they receive appropriate care? I understand that most hospitals are understaffed and overwhelmed, but something as basic as not giving IV fluids to a patient who has to tell them that he's dehydrated...well, that's terrifying. I'm glad that you got a break and that his pain is under control, but I hope you are able to bust him out now!
 
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