Aides for overnight?

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Tomswife

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Lost a loved one
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08/2022
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Livingston
I have been employing aides for overnight, 10pm to 6am.
Most nights are uneventful. Tom sleeps or rests and has no issues.
Coughing - i have been giving him mucinex and tylenol and that has substantially reduced night coughing. And I now have a suction machine.
Some nights Tom coughs.
Some nights , rarely, he has a BM. If yes, the aide wakes me and we do the hoyer etc together.

I am just trying to figure out if I need the overnight person.
Does anyone else use an overnight aide? If yes, what do they do?
Thanks. Kathy
 
Well...last night was Very difficult. PALS uncomfortable all night long. 12am , 130am, 3am, and on. He needs to be moved. Pillows not okay that had been okay. This is typical. And he needs whatever attention and care he needs. I got up each time he called. Aide did not move.

At 4am I told her she could go home if she wanted since she is not helping me. She said. No I will stay till 6am. Before she left she emptied the urinal.
 
Wow! What nerve! Just incredible....the aide's lack of caring.
 
I am using two agencies. Agency2 failed to send consistent and competent helpers for night duty.
I called agency1 and they plan to provide 2 people across the 7 days. Lets hope tonight is better than last night.
 
I give up. I give up. Last night aide seemed good. Nice person.
But Tom said she ignored him many times. I cancelled her. And any future night people.
I give up. Will sleep on couch.
 
I am so sorry. I hope you don't get too tired. My heart is with you that you don't have the help that you want and need.
 
So...no overnight aides. Tom sleeps at night. I give him chamomile tea and I think that helps. Last night I slept in our bed for the first time in weeks. I have a baby monitor that will pick up sound or movement. I went down at 2am to make sure the mask is on correctly. But the bipap will beep if there is a leak.
Will try sleeping in bed from now on.
Kathy
 
Glad you are back in bed, where you should be!
 
Just an update: aleeve; mucinex and chamomile tea. That is what I give Tom at around 10pm.
Then i can watch, hear him and talk to him on baby monitor. So far this is working. Several weeks now with no night aide.
 
My mother in law, for whom we provide a great deal of support with for my father in law (we live close, wife and I are only-children with 3 kids of our own).....she has caretakers from about 8am to 7:30 or 8 pm, daily. Thanks to the support of the VA, who provide about 40 hours and they use some of his benefits and SMC R1/R2 funds to cover the other up to 84 per week.

Gampa (almost 79) sleeps at night without issue, no need for night care. I think if he needed that, it'd be time to just go to a nursing home. He already hates that he just lost the abilty to walk. Had a clinic visit yesterday at the VA Hospital. I went with them, the care aid went too which was good. Sadly hearing the nutritionist telling to eat this, eat more of this, do this.....I just had the sense of someone after the iceberg hit telling the busboy on the Titanic to polish up the silverware. He weighs 111 pounds, I'm rounding up to the nearest pound here.

He ain't gaining weight back, come on, we know the deal. He's the perfect case to tell to go eat whatever suits him, do whatever he wants that he can, smoke whatever he wants (outside;)) and just let things go how they go. Its been a steady decline since around July 2020 when his gait started having issues until June 2022 when he was finally diagnosed, until now. They tell him about machines that can help him eat, breathe, suck secretions out of his mouth...you know, eventually. He has no interest in that and I don't blame him one bit! I think he has about a 50% shot of getting to 80. Not that its tape across a finish line anyone is keeping track of....
 
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Andrew, I am glad your family has so much help. It really does make a difference! You make me smile, talking about the busboy on the Titanic!
 
Recommendation: 1. write up a reference and or training manual.

I have an overnight help (for what its worth). That being said, I contracted through a company. I have some very good workers and some very poor workers - currently limited to 3 but I would can 2 of the 3.

Night shift is the EASIEST shift I can let them have.

PALS is NEVER, EVER fully comfortable going to bed and does NOT want to go to sleep!

PALS uses BiPap, has a Carrot (for keeping fist open), uses suction machine and cough machine - all required for 24-7 use during course of a day. Day time includes an Eye-Gaze machine which is part and parcel of using a Permobile power chair which allows easier use of the Eye-Gaze machine PLUS, there are exercises which should be done daily (and this CALS is so worn out from this whole scenario - as to be almost worthless at times!)

Day Shift would put more load on the hired care taker with the added benefit of the CALS knowing if they could actually trust the hired hand to do what is required. If that care taker is good, then the CALS MIGHT be able to get other things done - like taxes, keep up the check book, take a car in for servicing or get groceries - all those types of "vacations".

My night shift has surprised me with busted air lines for the BiPAP, never letting me know they were broke, clogging the garbage disposal with a glass jar, leaving Pistachio nut shells on the floor for me to find in my stocking feet (I do not eat those things), going through my fridge which I cringe to think of what I have growing in there. They open food, then decide it is what they want or not. if not, they put open single serving item back in the fridge. More on al this later. I would recommend a day shift so the CALS can actually observe, train and or correct the help and get comfortable with them. I have caught night help sleeping through or ignoring BiPAP alarms or ignoring the PALS summons. Worst, violating the privacy of the PALS. That one I sent packing and told the company hat that employee was "terminated" from my house. Oh, the weeping and wailing of "we are so sorry", that employee wants to explain and that they ??????.

Gotta run, we are 4 hours into night shift, I am still up - and this is MY sleep time. It doesn't always work out well.
 
Hi SeaGunny, my sincerest sympathies. I haven't gotten overnight help yet but I really need to, and I'm dreading it - I think you're right I should start with someone who'll come a few day shifts for training and observation (me observing them, that is). I'm not sure how much sleep I'll actually get, thinking about all the things they may be NOT doing. Hope you get more effective help soon. Sleep deprivation makes everything else worse.
 
From experience: Night shift lets YOU sleep as well as take care of your PALS. Problem is you are too accessible (and you want to be) if they have problems. My PALS is NEVER EVER comfortable!

That aside, your fatigue will increase overall with some respite here and there BUT you won't be able to take care of other issues or find taking care of them extremely taxing.

Here is a suggestion: Get an initial overlap. Schedule a (long term) "day shift" of 0800 to 1600 or even 1800 (6 PM) coupled with an initial night shift. YOU need rest!

Nights may wear you out at first - there will be 1000 and 1 questions (That is why I suggest the "How Too Book", then a Log Book and 3rd (time sheets). plus a To Do list and also a Supply List / and Notice List.

Treat your home as if it were a place of work:
Draw up a Fire Escape Plan, note where phones are at in the house, nearest fire hydrant, fire extinguishers, alarms and even nite lights or night lanterns. (I keep several battery powered camping lanterns. Also, decorative candles in sconces work as well. POST THIS ON THE FRIDGE!
Emergency Action Plan: These are "what Ifs" and tell yourself and those in the house who to call, during what event (tornado, hurricane - go to basement? Flooding - break out the boat? You can find samples online - FEMA has some forms that one can use.
CALL LIST Doctor;s Numbers and medical help to include at top, the nearest (preferred) Emergency Room, Fire, Police, ambulance, friends, Family etc.
Have a PALS Routine: Be as specific as you can get and make it DETAILED!
Sample
0000 (Midnight) PALS sleeping.
0600 If PALS wakes and toilets, change clothes to day clothes and put back to rest with BiPAP
0800 Gently wake PALS. Hydrate using syringes, ext. tube w/ 3 oz of water. Administer Liquid Tylenol if requested
0900 Wash PALS face, neck & ears w/ mild liquid soap, Brand XXX using soapy cloth, followed by fresh water cloth & dry
~ Continue on ~
{ DO NOT FORGET to inform them of where supplies are located!}

Your "How To" book - INCLUDE PICTURES IF YOU CAN! This make it easier for us "Dummies" ( a story there for sure) Keep this in a binder with document protector page covers. (you can wipe the peanut butter and jelly finger prints off fairly easy. :)

Unfortunately, local tradition here is that if it is a day shift, the host provides the meals. Night shift is supposed to bring their own. I do provide bottled (not designer) water and coffee plus my family put out snacks (for me) but everyone else seems to enjoy this "treat bar".
(FYI I have lost about 40 lbs over the last year or so and my kin are stunned).


DAY SHIFT: I am hoping you have rested enough to observe, correct, make notes to change your "How To" Book and maintain the PALS log book. When were they last fed and what? If on a liquid nutrition diet, this is pretty important events. Doc and Nutritionist sta these feedings should be 4 hours apart. Hydration need to be about 2 hours after start of last feeding.

What do you do IF you have to deviate? Due to a late start of feeding during the day, my PALS wanted hydration and did not want nutrition or a regular feeding. Best I can do at present is 11 oz of nutrition with 12 oz of water per feeding with 3 oz of water at start of day and midpoint between feedings. ALL OF the Feedings are also medication points. First and last Hydration ( roughly 0800 AM and 10 PM or 2200) are also medication administration points. What I did and would recommend, is the "light feeding" could be 4 oz of water and or maybe some nutrition of 4 or 6 oz coupled with (this works best for my PALS) is Nutrition is X oz and water is same amount or maybe an extra oz. In any case, I mix the medications in with any liquid I administer.

Once you have observed 3 or 4 of these workers under your watchful eye, you will either get a sense that they are competent to work with you and your PAL - or Not! With the good workers, you can let them know YOU have a Doctor's appointment or you need to go to the pharmacy or you need to do any of the numerous things we all get involved in. At this point, IF you cancel the night shift then you are watching the PALS. However, if it is a restless night, you can sleep in once the help arrives. That afternoon, you should be able to get out and do any errands or tasks outside the home or tackle some at the home.

Night shift is something that we have to ease ourselves into and do it so that we can be wide awake when the need arises. I got some training over at Coronado watching the future SEALS in their training - I worked security on nights.


Best Wishes and Best of luck
 
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A tradeoff worth considering is to have part-time help during the day for lower stress and then to put forth maximum effort for the PALS to have as much uninterrupted sleep as possible, to avoid the night shift help thing.

Most night shifters have day jobs as well, and/or chaotic lives for other reasons. Their competence and compassion in the face of sleep deprivation and other complications is often dicey.

I don't believe that a PALS is "never comfortable" and doesn't want to go to sleep, for no reason. That is an end-stage level of restlessness. I would try to find those reasons --search and destroy.

What helped Larry sleep through, which differs for everyone, included foam under all major joints, pressure boots looped together, etc. Things like the low voltage heated mattress pad, flannel sheets, massage/ROM exercises in the morning, fan, falling asleep to an audiobook, xPAP-friendly pillow, clean face/BiPAP mask, getting the right bed angle on the head, feet, and torso, etc. all helped. It is purely about comfort.

Since Larry felt colder than we did, he got the localized heat as above so we did not have to crank up the furnace.

Sleep, depression, or anxiety meds may benefit some people on balance, but because of their respective mechanisms of action, these meds can disrupt sleep architecture, with frequent reawakenings or difficulty falling asleep to start with.

So when you're tweaking the sleep environment, in addition to the above, meds can be one place to start. Blood pressure meds can be adjusted scheduling-wise to promote sleep, as well.
 
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