Advice to help with sleepless nights

[checkmat2]

Hi Everyone,

I haven't been on-line for a while......but I would like some feed back from our wonderful caregivers out there.....my question is:

What do you do to help with sleepless nights. I work 8 to 5 monday thur friday...and have three boys. I am having to get up every two hours to help turn my Pal (my husband). I am over tired and starting to get crabby and I feel helpless.

Could you please give me some idea in getting some extra sleep and rest.

Thank you and love you all
Christina;-)

 

[CindyM]

It sounds like your hubby's need to be turned is what is interfering with your sleep. I am not surprised. :lol: I tell my hubby his deafness is interfering with my quality of life since I get hoarse trying to communicate with him. But that's another story....

Quadbliss says a good quality memory foam mattress keeps him more comfortable so he will not need turning as often...And some PALS take a light sleeping pill so they get more rest at night.

And you might need to think about having more help for yourself. A lot of PALS don't like to have extra help but if you explain that it is to your benefit as you simply have too much on your plate, he may see your point. Just some ideas-our CALS might have some better ones. Cindy

 

[Debbie53]

I am so sorry, Christina. Not getting sleep is the absolute pits! My doctor actually believes that a sleep disorder is at the root of my Fibromyalgia, so I take 2 drugs primarily to help me sleep more soundly (neither one is an actual sleeping pill) and they do work, most of the time. But if you have to get up every 2 hours, I guess that wouldn't be the answer for you...unless you could go right back to sleep. What does your doctor say?

Debbie

 

[BethU]

Is there any way you can get a nap during the day? The place I worked last had a "quiet room," with recliners, dim lighting, etc. I ate at my desk and spent my lunch hours napping for my last few years at work. This was before ALS. I just had lousy sleep patterns ... waking up every hour or so and not being able to fall back asleep. People all over the building (men and women) where I worked were napping on their breaks ... pulling chairs together in the break rooms, etc. That's why they added the quiet room. (It was a newspaper and many times people would pull an all-nighter, so it's not that they were such a great employer ... they just wanted to squeeze as much work from the staff as possible.)

Even if your workplace doesn't have something like that, some women's rest rooms have couches. Of if you have a private office, you could nap on the floor (I've done that, too). I've also napped in the back seat of my car on lunch hours. (Probably not a good idea in Canada in the winter.) Once when I was working two jobs, my boss let me nap on the couch in his office in the afternoon.

Are your boys old enough to help reposition your husband at night? If so, maybe you could use one of your boy's beds, and let him sleep in your husband's room with a sleeping bag, or something, so you can get a full night's sleep.

Getting good sleep is critical ... especially with the burden you're bearing!

Take care.

 

[Zaphoon]

Christina,

Have either you or your husband tried something like Melatonin (sp) or any other sort of natural sleep aid? I am told this works very well.

Zaphoon

 

[joelc]

Sorry, you asked for CALS feedback and I am a PALS. But I could not resist the urge to respond.

I sleep on a ROHO mattress and don't have to be turned all night, I tried all the other types of mattresses and was needing to be turned several times per night. I also take a gravol pill to help me sleep, it works!

 

[givenin]

The ROHO is a great idea. They come as a matttress or as a cushion to sit on and make a huge difference but are very costly if not avalible through the society. I am afraid that the sleepless nights are apart of it for the CAL. It is amazing that you are working 8-5 plus all else. You have to be carefull not to burn out, is there anyone you could get to help if your sons are not old enough. One full night of sleep makes a big difference. Your body will adjust or mine did anyway and I would find moments that I would just nod off for a bit and wake and carry on and it helped, mind you I worked part time then and that was hard enough, don't think I could have worked full time with everything else on top of it.

You also have to remember to take a little time for yourself, just a short walk in the fresh air will do wonders. Sometimes easier said than done but it helps.

Hang in there

 

[mndireland]

Hi Christina, sorry Im not sure i understand why your husband needs to be turned all night? I am a cals for my mom, although she can still walk in small doses, she does get out of bed and get in around the other side, she cant pull herself up and down so she rolls in and out of bed, I also found silk bedclothes help for them to move about, but can you husband move himself at all? If not then Im really not sure? But i was told by the doctors here not to use sleeping tablets as these relax the muscles and with als this is dangerous!
Not sure if any of this helps you much?

 

[givenin]

Unfortunatly our PALs as they loose strength can't lift or shift themselves around anymore and with the loss of weight and muscel tissue can feel every pea under, in, all over the matress.

 

[checkmat2]

Thank you every one

for the great advice and support..........all helps.

Christina

 

[anne]

Hi everyone...I have not been posting for some time now.Some of you might remember me, my mom passed away September 07 with bulbar after a 15 month battle. I am back on the forum and looking for advise on how to help my sister in law who has been battling ALS for the past 8 years. Her symptoms started in the feet and are working it's way up. Her arms are now getting weak. One of her many complaints are that she is having pain in her feet and feels that the blankets or covers hurt her feet. Does anyone have any suggestion or is there an item that could be used to raise the covers off of her feet. Her husband rolls her over about 20 times per night and gets very little sleep. I had suggested that they get a large tube of somesort and place her legs and feet through it and then have the covers resting over top. Not sure if there is an item out ithere or if anyone has any suggestions.

Take good care of yourselves. Anne

 

[checkmat2]

Hi anne,

The only help I could pass on is that my husband has hospital bed where he can adjust the legs and head. But these days he is loosing all feeling and touch in his hands.....so I too am running out of ideas to help out.

Christina

Hi everyone...I have not been posting for some time now.Some of you might remember me, my mom passed away September 07 with bulbar after a 15 month battle. I am back on the forum and looking for advise on how to help my sister in law who has been battling ALS for the past 8 years. Her symptoms started in the feet and are working it's way up. Her arms are now getting weak. One of her many complaints are that she is having pain in her feet and feels that the blankets or covers hurt her feet. Does anyone have any suggestion or is there an item that could be used to raise the covers off of her feet. Her husband rolls her over about 20 times per night and gets very little sleep. I had suggested that they get a large tube of somesort and place her legs and feet through it and then have the covers resting over top. Not sure if there is an item out ithere or if anyone has any suggestions.

Take good care of yourselves. Anne

 

[joelc]

I put on heavy winter wool socks and then keep the covers up higher than my feet so they stick out the bottom of the sheets. My boys want to build a tent kind of idea to take the weight of the covers off my feet. If we develop something that works well I will let everyone know - could build them for everyone!

 

[anne]

Thanks for the suggestions. She does have an adjustable bed but the covers still seem to be a problem.

Anne

 

[CindyM]

They sell little tent-like frames to hold the blankets off your feet. You probably can see pictures of them here: http://www.sammonspreston.com/

Your boys are right- there most likely is an easy way to make these things. Good luck! Cindy