I need help with effectively communicating with ALF staff.

Tiny, you are perfectly within your rights to call a Care Conference at any time. Don’t worry about what anyone thinks. These are informational meetings; a time to share concerns and ideas about your loved one’s care. You aren’t walking into the meeting room carrying a large sign that says, “”I’m going into this meeting to gripe and complain.” His aides and therapists and whomever else you request to be there should be there.

And also, if you want to bring Dad home, go ahead. You won’t know how it will work out until you try. If it doesn’t work out, return him to a facility. But be aware that constant changes in living arrangements can cause him to become more confused and harder to manage.

Whatever you chose, as I said, I wish you the best outcome.

Hi Tiny,

You received a wealth of valuable advice. Good luck, and try to relax.

My mom has been UNPLUGGING things in her room, confusing the staff and me. Maybe your dad is unplugging it himself ?

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. 

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.

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))))

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".

Tiny,

"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.

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

Well, Tiny, in your case this might be the best thing as long as you are very aware of what you’re getting into. If you are very persnickety about your home, be aware that now it will become a hospital room. I have a bed in my family room and durable medical equipment all over the house, not to mention hygiene and medical supplies. There are so many other caveats, and I could go on for hours, but some people just believe that no one can do the job better than they can. And, in your case you might be right. It might be a learning experience for everyone involved.

Whatever you decide. I know everyone here wishes you the best outcome.

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.

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.

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.