I'm stuck between a hard place and dementia!! I finally figured out why Dad keeps wanting to move and why he keeps packing his things.

He's getting frustrated that the staff is really being so rigid with the oxygen requirements. Yes, his orders say that he has to have the cannula in his nose 24/7, but at his last facility, they would let him ride around on his scooter without it for a few minutes as long as he stayed seated on his scooter. He normally just rides around the halls for about 10 minutes and returns to his room.

At the new place, if anyone sees him without the portable tank, they send him back to his room to get it. It's not registering with Dad that he just needs to get his portable and he can come back out. He really thinks he's being punished and "sent to his room".

Of course, I've tried to explain to "put your box in the basket when you go in the hall" (translation: take your tank with you) to Dad, but it just doesn't compute. I've personally witnessed him get confused with the whole switching from the room unit to the portable, and he doesn't seem to understand that it Oxygen isn't working if the cannula isn't in his nose. Most days, he doesn't even understand what the portable is. He has called it a radio, air conditioning unit, the scooter, the whatchamacallit.... He really doesn't understand.

I know that they don't care for me at the ALF. I try to tactfully ask for things and be really nice, but I'm sure I get more eye rolls than anything because I'm so hands on.

I want to communicate to the staff that it's OK with me if they let him ride around for a few minutes without "the box" and Dad seems to fight back a lot less if someone just follows him back in the room and puts the cannula to the room unit in his nose without even mentioning it.

For the $975 monthly "oxygen" fee, I would hope that they could help out with this, but I find his portable unplugged / dead battery on nearly every visit. The log that they created to check it each shift goes unsigned... it's really frustrating, but I just do it myself now without saying anything because mentioning it doesn't generate results and makes me look like a total B****.

I've emailed and asked, but nothing. I don't know if they consider letting him ride around without the oxygen for a few minutes as breaking the rules or a liability...

...and I know that he needs a NH. I just haven't found one that meets my standards and I haven't figured out how to fund a private pay nicer Memory Care facility. Been on the waiting list for a Medical Foster Home with the VA for over a year now...

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"Yes, his orders say that he has to have the cannula in his nose 24/7"...
Tiny, do you realize you are asking them to IGNORE his doctor's orders? If you want him to ride around without the O2, then get his doctor to order it that way. "Patient may rise scooter in hallway for 10 minutes without oxygen providing O2 stays above 92." Or some such order. They are only covering their behinds.

But at his last facility, they would let him ride around on his scooter without it."
So if anything happened to your dad (de-saturating, turning blue, becoming short of breath, passing out, etc.) you'd throw a fit! You already don't think they do a good job but would you turn the tables and accuse them of neglect?

"I want to communicate to the staff that it's OK with me if they let him ride around for a few minutes without "the box".
"I don't know if they consider letting him ride around without the oxygen for a few minutes as breaking the rules or a liability..."
LEGALLY, they can't do that. They would be practicing medicine without a license and could loose their operating license, a high price to pay to make a patient's daughter happier. Since it's against the law, they have to do what's ordered.

"At the new place, if anyone sees him without the portable tank, they send him back to his room to get it."
An Assisted Living facility is not a Skilled Nursing facility. They don't have the staff to be following one person around to make sure all is as it should be.

"He really doesn't understand."
So he can't be the one held responsible to switch connections. And since he's in an AL facility, they can't watch everyone.

"I know that he needs a NH. I just haven't found one that meets my standards.."
IMHO, maybe you could pick the "best" of the NH's and give it a try. His living arrangements don't seem to be working for him. He would get more attention at the NH or MC.

"I have been considering moving Dad home just to ease the stress of THEM not doing what needs to be done."
As I remember, this has been an ongoing inner battle you're having.
Some people just don't learn from others suggestions, especially those who have done it.
So, go ahead and bring your dad home. You can dote on him all you like and give the care he "deserves". Then, in a few months, you're ready to commit Hari-Kari, come on back and we'll support your decision to place him in a NH.

"...sometimes I think if it was me and one dedicated person.. my stress level would go down... and the bill would as well."
Oh my dear, your stress level would be through the roof! What happens when the "dedicated person" has to call off? People get sick, their family gets sick, weddings, graduations, sick pets and then what? I guess it would be 24/7 for you. Ever done that? I have and, with dementia, it's only going to get worse.

But it's your call. Just don't expect personalized care at ANY facility. No one will do it like you but no one will loose their freedom, their health, their friends or their mind like you will.

Good luck.
Helpful Answer (11)

From "ShakingoffDust": "I would just try to stay calm, keep your mouth shut as much as possible and ride it out til you get him placed. they can make your life a living hades, and then some. God forbid you come in one day and they've got him on mega-doses of drugs to control his 'behavior'."

So, to Tiny and anyone else reading this; no one at a NH can administer drugs unless ordered by a doctor or APRN. Which is why getting the folks doing the prescribing of the O2 is the right thing to do; get the doc or APRN to write a sensible order about the O2.

I deeply resent, and have reported, the paranoiac rantings of the poster who tells you to shut up until you can move him home.

If I recall, Tiny, the problem you have is that the VA WON'T prescribe calming meds for your dad's agitation and anxiety. For my mom, meds were the only thing that helped. No, she wasn't medicated into oblivion; she was calm and happy. Her "best self".
Helpful Answer (11)

Just giant hugs, Tiny. Good advice from Ahmijoy.

A thought, too, to help with your own deep breaths. If you got abducted by aliens, the facility would have to cope, yes? And they would cope. That is why it is *okay* for you to let them sort this out in their own clumsy way. Encourage, remind, persist; but don't expect routines to bed down quicker than they actually will.
Helpful Answer (7)

Tiny, every time you visit, take a photo of the O2 journal. A photo with a date/timestamp.

If they back-fill the journal with fake entries before your care conference — which is quite possible —you will have proper evidence.

BTW - dementia sufferers who confuse life-saving medical equipment with a portable radio will also..... mistake the clothes hamper for a toilet..... turn on the stove when they think they turned on the TV..... etc etc.

Taking your father into your home will be An Unmitigated Disaster.

You already know this.

Yet you seem convinced that the more you self-sabotage, the better off Dad will be. 

This is magical thinking at its worst. Tiny, please save yourself. ((((hugs))))
Helpful Answer (7)

Ok. A few things, Tiny. Trying to reason with Dad, in his current state, isn’t working, right? And it doesn’t sound like you’re getting much cooperation from the staff (eye-rolling, etc.) The problem is, you got off on the wrong foot with them. You never get a second chance to make a first impression. You may try to be nice and polite now, but you might be acting like someone is standing on your foot while you’re doing it, grinding their heel into your toes. Staff picks up on defensiveness.

Now that’s not to say you can’t advocate for your dad. I would call a Care Conference. You are within your right to call one any time. Bring notes of what you’ve observed but don’t give them a litany of their shortcomings. You rely on these people for your dad’s care. If you, at any time in the past, have been angry, accusatory, or in any way less than “nice”, apologize, sincerely. Share what you’ve seen and experienced and ask how “we” can fix this. When you visit, take Dad out in his scooter for 10 minutes then back to his room and hook him up. Of Staff sees it’s ok, they may follow along.  Be firm that since you’re paying a good buck for the oxygen care, you’d appreciate if they’d be a little more proactive since Dad’s health depends on it. Are you certain Dad isn’t messing with the equipment since he knows he should be doing “something” with it but not sure what?

I think I’ve mentioned before that visibility in the facility is the best way to keep track of care. Be there at all times so you get to know the whole staff, especially Dad’s aides. Be genuinely friendly but not ingratiating. I still miss some of the people at my mom’s facility and wish they were still in my life.

You want the best care for your dad. No doubt. There are ways to get that care. But walking in and looking for staff mess-ups isn’t one of them.
Helpful Answer (6)
anonymous262233 Jun 2018
Thanks Amijoy. Really helpful advice. I certainly hope that the staff doesn't think that I'm nit picking. Outside of a couple of emails and a note with smiley faces on the communication board, I try to just shut up about this stuff. I HATE when I'm not liked and I try to do everything in my power to be a likeable person, often to my own dismay. I bring the staff gifts and try to use "we" language. I wonder if they think I'm being fake or something...

I think that the staff does what they can within their limitations, but Dad is probably a handful. He honestly just doesn't understand and misinterprets a "Let's go back in your room to get your oxygen" as meaning "stay in your room"

...and he's not fiddling with the machines because he can't see the buttons.

How can I request a care meeting without them hating me even more? I REALLY feel badly when people don't like me. I feel like it's my fault (codependency 101).
Ok here is my advice and i was a Nursing Home Nurse. The more you go the more they will unconsciously take care of your family member. Be friendly, say hello, know their names. Ask how is he doing today ..that sort of thing. Its not a horrible idea to bring a box of cookies or something once in a while. I know its bribery but hey it works. shrugs . Now talk to the aid that is on your dads wing the most often. Explain things. Have them go with you and take his o2 saturation on the oximeter before he goes on his ride and w/o it . They arent going to want him to go w/o it if it drops below 90% like the other lady said. Does your dad need help dressing? I dont know if you can do this . But try to get your dad to take his ride when they are already there helping him. Right after he dresses or giving meds or something . So they can just put the portable o2 on and not worry about it. Nurses dont really give different care, however they do have favorites. They have alot of work to do, if you can work the ride into their normal activities with him it will be a big bonus for everyone
Helpful Answer (5)

I like all the comments but Sue the most. I agree, they are just doing what the doctor order says. But...I would talk to the RN about his oxygen not being plugged in. Remember, that the CNAs change. Shift changes and different ones on the weekends. Or...turnover. Maybe a note should be where the CNAs can see it reminding them about the oxygen. To me this is important. Approach the RN saying you have a problem and could she help you. Bring up what the last AL allowed and Dad is very confused that he isn't allowed to do it now.

I found that some of the CNAs in Moms AL didn't understand Dementia patients.
Helpful Answer (5)

Agree with Sue. The staff are following physician orders which need to be followed.
I would seek a doctor’s order in writing to allow for those short trips without oxygen. 
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My mom has been UNPLUGGING things in her room, confusing the staff and me. Maybe your dad is unplugging it himself ?
Helpful Answer (4)

Tiny, either buy or ask one of the aides to accompany you on one of his meanderings. Take his SAT rate when he's in his room, and on oxygen. Take his SAT rate again about halfway through his journey, and again when he returns to his room.

If the SAT rate drops below 90 once the cannula is removed, and stays at that level or continues to drop, raise that issue with one of his medical staff, not accusingly, but as a matter of sharing a concern.

Providingng proof that he needs oxygen on his little journeys is the best way to convince the staff.
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