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Cleverdish Asked September 2015

How do I modify the waking at night?

 Every 35-45 minutes to get up to urinate. Mom is 92, CHF, on a-fib meds and diuretics. No $ for help.  June: week in hospital/ICU CHF, sepsis, systemic strep. Two weeks rehab. Home now two months, and up every single night 7 to 9 times a night. I've pestered cardiologist, gastro. doc, and PA; they say it's to be expected. I'm concerned about being able to function here ! I have to slipper and gait-belt her each time, lift out of bed, chair, and replace in bed with numerous pillow props. Went to give blood the other day- my iron is in serious mode, and yes I feel it. (They wanted to treat me to some, lol). She's a couple hundred bucks off in qualifications for Medicaid Waiver (20 hrs of help) and a hospital bed. Refuses to help herself qualify, because she does not want anyone here but me, and objects greatly to a hospital bed. I've asked the 'professionals'; I deem you my friends in the trenches here the 'experts'. Help me out of this one. I hear it only gets worse from this point on. (Not approved for hospice, btw.)

Mizbrandon Sep 2015
Maggie Marshall ia coreext. A staffed facility wouldnt do what u are doing. Bless u for trying but you better step back and reassess shooga. I suffer with low iron, too, aaaaaand you gonna wear out and flop if you dont take control. Nooe not easy but YES required. Hang in there and let us know what helps or happens.

jeannegibbs Sep 2015
This is a very serious situation. inability to sleep through the night is one of the leading causes of placing a loved one in care. No one can be an effective daytime caregiver when getting up 7 or 8 times in the night. I tried it. Can't be done and retain your sanity and health. So ... something has to changed before it changes out of your control.

She is not waking up because she is hallucinating or having night terrors or delusions. She is waking up for a simply biological fact ... she feels she needs to pee. Does she actually pee when she gets up? Even with a diuretic it is hard to imagine she produces enough pee to have to go every hour. Try to keep careful track of when she wakes up and what she actually produces. Does it appear that there are many "false alarms?" Cleverdish, gather all the data you can, and then discuss it with her doctors again. Does she have a geriatrician? If so, that is the one I'd try to get help from. Is there something she could take to reduce the urge she feels?

Does she have some nighttime anxiety? If you observe that when she gets up, make note of it to discuss with the doctor, too.

Is there any other drug she could take that would not act as a diuretic? Or is there a diuretic she could take early in the day that would stop working by the time she is in bed.

You have to get a medical professional on your side who understands that this is not a trivial concern!

Using incontinence underwear is a good idea, if you can convince her it is for "leaks." It may help her relax a bit. But it is EXTREMELY difficult to convince an adult to just go ahead and pee in your special underwear. VERY difficult. Beyond the age of about 3 it is thoroughly ingrained in us not to deliberately wet ourselves. We do not want to foul the bed we are going to lye in all night. Even if we have the reasoning power to know WHY we should be doing this it is too much to expect.

I see three possible options:

Convince one of her doctors to take this very seriously and work with available drugs to reduce the urge to pee, help her sleep so deeply she can ignore it, deal with any anxiety involved, or otherwise come up with a medical solution.

Get in-home help. Nighttime help to get her up once an hour. Or daytime help to allow you to nap during the day and then get up with her once a night, on a schedule you two agree on.

Place her in a care center where there are staff on duty around the clock.

If you can't come up with some combination of the first two that works, then I don't see how you can avoid the third option.

As to Medicaid, she needs it. See a lawyer with her about how to make that happen. Since she doesn't have dementia and (we hope) can still be reasoned with, explain that you need the help, or a nursing home will be necessary. Do not make it sound like a threat or an ultimatum, just a sad fact you have no control over.

And order the hospital bed. Insist she try it for 3 weeks. (My husband was SO much more comfortable in an adjustable bed. She may be very happy with it once it is there.) This is a condition of you providing help.

Again, don't ever make the nursing home sound like a punishment for not allowing helpers or not using a hospital bed. A nursing home may be necessary some day in spite of every cooperation she can give. It is not a punishment and it can be a very good thing if it is needed. But the truth is it will be needed if you can't figure out how to cope with her needs, and you need her cooperation.

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glasshalffull Sep 2015
You should NOT have let her leave hospital without being able to get back and forth to bathroom by herself safely. If she goes in a gain for anything...have her stay 3 days and then off to skilled nursing/rehab until she is stronger. If she can't get up independently, she needs to go to rehab. Medicare pays 100% (after a qualifying 3 day hospital stay) for first 20 days and 80% for days 21-99. If she needs care beyond that there are also LIFE TIME days that can be used at 80% (I think 50)

I was going crazy with 24/7 care...decided we needed a change. My husband and I moved to condo in same building below mom. She was not happy...but she has adapted fairly well. We have electronic video monitor and wireless doorbell for help. Mom knows she needs to be independent to the bathroom or she can not remain out of a nursing home. Mom gets $5 more than limit for medicaid, food stamps and the like.... but depends and incontinence products can count on spend down to amount...not hard there. Commode might work...I said no to mom about that. (There is a local non-profit near us that loans out commodes and walkers and shower chairs to caregivers) We have installed all kinds of bars in bathroom including swing downs by toilet. so mom is safe.

Not perfect (can hear mom say "Perry Mason" to TV remote at 3 AM) but at least I get to sleep with my husband and snuggle with my cats and have my own space...

Make sure you get support...and meds for yourself...you are doing great things for your mom...she will never be happy (because she is no longer independent) but she will adjust...best wishes! hang in there. I only made the move after I began seeing a counselor and talked through possible options to make me happier and still let mom get care.

timbuktu Sep 2015
Get a hospital bed,preferbly an electric one.During my mother's last hospitalization that is when I made my move because when the EMTs came to get her they literally could not get the stretcher and themselves in her room , it was a mess and that decided it for me that I would no longer listen to the whining,crying about "my furniture".I felt cold hearted and yet knew I was doing the right thing. Now she loves her new electric bed as it is much easier for her to get in and out of on her own.And the "furniture" if you could call it that went to Good will. My mother tends to hoard, the more surface space you give her it will be immediatly cluttered somehow.

BarbBrooklyn Sep 2015
"I can't do this mom".

If your mom doesn't have dementia, she will understand that you are one human being and will break under this stress. And then where will she be? Without an advocate ?

If mom DOES NOT understand this and continues to resist, either cognitive decline has set in or she's got something else mental health-wise going on. And so you need to be the adult in the room and save yourself.

And see an eldercare attorney about the Medicaid thing. Qualified Income Trust or Miller Trust is what she needs.

GardenArtist Sep 2015
When is she getting the diuretics? If at night, switch to morning. Same with water; encourage her to drink more during the day and have an early evening meal so she can complete her bathroom needs before bedtime. You can also plan the meals so that foods with more liquid (soups, etc.) are eaten earlier in the day.

I would also recommend getting a commode to keep near her bed.

Over the months, I've seen so many posters write that their parents don't want something and/or won't do something. I was that way for a long time, acquiescing to limitations and demands because of age, limitations, etc.

Now I'm not. I still try to be flexible but sometimes just flat out state that something that needs to be done is going to be done or I'm not going to be part of that picture. I'm not going to be the rat on the treadmill when something can be solved by considering options, such as a hospital bed.

Parents need to be firm; so do caregivers. There are at least 2 adults in these situations, and even though one needs care more than the other, that other needs consideration as well.

So I'd go ahead and order the hospital bed. It'll provide a much safer platform from which your mother can exit for those nighttime trips.

Your mother also needs to accept that you're not invincible and help needs to be considered. If your low iron level compromises your strength and stability, you could drop her. She needs to know that to recognize that you're declining in strength.

Sadly, it's time for a mother wake-up call: guess what, Mom? I'm human too and I can't function like a robot. So we make some changes so we can both go forward with as few complications as possible. Then duck when the verbal missiles start flying.

It benefits you both; the key is to help her understand that. Good luck; this wasn't easy for me and I'm sure it won't be for you.

MaggieMarshall Sep 2015
Medicare will pay for a prescribed hospital bed. You can then raise the head and foot of the bed and it is very doubtful that she would be able to get out of bed on her own.

Put her in Depends briefs with an added menstrual pad inside and tell her you HAVE to get a good night's rest or you won't be able to keep her at home. THAT IS NO LIE!

Stop liquids two hours before bedtime.

Call the doctor and ask him for a sleeping pill for her.

All of these things in concert will hopefully help your problem.

For you to remember -- even at a nursing home filled with aids, staff would NOT be getting your mom up like that. You'll give out, my friend.

sunflo2 Sep 2015
Call your local senior center or center for aging and talk to them about your situation and they can explain financial options for you getting help, skilled nursing care at nighttime, or getting mom into a NH or other residential care (possibly on medicare now or eventually once she spends her money).

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