Night waking?

[KinzaDAF]

Happy Thanksgiving everyone! I am at my parent's home in Ohio. Mom has been having to get up a lot during the nights with Dad. ( He has to use the bathroom frequently. ) Mom has not been getting any sleep and can't figure out why Dad has to "go" so often. Does anyone have any ideas? Also, when they try having Dad sleep upright on the inclined pillow I got him he "slips down" so that only his head is on the pillow. ( I plan to test this out myself and see whether "I" slip down too. ) Dad's FVC is now at 20%. He needs to be upright. How can I keep him up on the pillow?

Debbie

 

[KinzaDAF]

p.s. Dad is getting all his nourishment via PEG and is using Jevity now. I thin he will be getting a different formula soon as some of his lab values were off. Could all this liquid nutrition make Dad have to use the bathroom more often, even at night?

Debbie

 

[joelc]

You need a hospital bed to correct that problem. These beds have an elevating foot feature that prevents the slipping you are talking about. I had the same problem using a wedge on a regular bed. We purchased an UltraMatic bed and it has been marvelous.

I also had the frequent urination problem but managed to train myself to not have to go during the night. I would hold it as long as I could and eventually I could go all night without a bathroom break. It is all about training. I tried to go more during the bay so I would not have to at night.

Good Luck!

 

[BarryG]

Debbie the liquid diet can certainly make it necessary to urinate more often. Almost all of my food is now liquid through my peg and I am now getting up at night when I never did before. Thankfully for me, I can still look after myself so no on else is bothered by my getting up. Maybe for your dad having his feeds earlier in the day or getting a more concentrated formula so the the liquid volume could be reduced might help to reduce his nighttime urination .

 

[Al]

Prostrate problems can cause frequent urination. A blood test can tell and pills help. A few of my men friends had that problem.

AL.

 

[BethU]

Joel's suggestion about the hospital bed makes sense. Maybe until then, a pillow under his knees would help? (That's usually quite comfortable, too.) And a flannel pillow case?

They have condom catheters that just slip on for incontinence and frequent urination, but my husband's urologist said they can lead to bladder infection and recommended not using them.

 

[halfin]

For the past few years I have often gotten up twice every night. Once I got my ALS diagnosis I realized this would be inconvenient once I need help. I was able to retrain myself down to one time, and for the past few weeks usually I can go all night. I have also reduced the total amount of liquids I drink, and especially cut back after dinner. I used to keep a glass of water by my side and drain it constantly. Now I am much more sparing.

Unfortunately this doesn't help you with a feeding tube and liquid feedings. I am curious, since I will need one some day, how does it work with thirst and hunger when you are fed by tube? Does eating that way satisfy your hunger the way eating by mouth does? And do you ever get thirsty and drink water through the tube, how does that feel?

 

[BethU]

Hal, tube feedings get rid of the hunger pangs, and make you feel comfortable, but they're not as satisfying as eating. Water by tube doesn't satisfy thirst. Maybe because my mouth droops open and I mouth breathe, my mouth always feels dry ... while, at the same time, I drool, because no lip seal. I can't move my tongue around to distribute the saliva. I have to just figure out how much liquid my body needs a day and try to get it down. I was used to sipping water constantly, so it's hard to gauge when you take bolus feedings how much water to add.

 

[BarryG]

I would say that the dry mouth is the only physical problem that I have with not eating or drinking by mouth. I am not able to eat regular food now but as Beth said, my formula via peg does fill me up and gets rid of the hunger pangs. I am still able to drink water out of the tap because of how I am bent over so I am able to wet my mouth and quench my thirst but if there is no tap available I drink water through my tube and just wet my mouth.

I usually take in about 180ml of water with each of my four tube feeds per day, one 60ml syringe of water before the formula to flush the tube, the 237ml box of formula, and two 60ml syringes of water after the formula to flush the tube.

As far as being satisfying, no, it isn't like eating your favourite food or drinking a beer or glass of wine but you aren't hungry or thirsty which is something that a lot of people in the world can't say.

 

[danjay]

Do consider the prostate issue. I was getting up 6 times a night until my Dr. prescribed flomax (great name eh?). It is a smooth muscle relaxant and it did the trick for me. I open up the capsule and pour the little beads in my PEG at dinner. I think every male in my family by the age of 55 has had some kind of prostate issue. Just comes with the territory.
Dan