This man is the most STUBBORN old geyser on the planet!!!
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With Dad's COPD, the doctor has instructed him to wear his oxygen 24/7. After MUCH begging, pleading and extra money, I was able to finally get him approved for one of the nice portable concentrators because Dad was afraid to use the traditional oxygen tanks (though the backpack for it was quite stylish).
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For the last year, Dad would only wear the portable whenever I would take him out (because I would force him), but refused to wear it in the ALF (to go to meals, etc.) As Dad's condition worsens, it's to the point where he honestly CAN'T be without the portable unit, and he's had horrible shortness of breath episodes in the dining area lately when he doesn't wear it. As a result, the ALF staff has pretty much told him he can't leave the room without it.
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I don't know if this is dementia. I would think not since Dad flat out told me he doesn't WANT to wear the portable tank, but he has now essentially punished himself -- refusing to go out of the room for meals since he has to wear the oxygen.
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I've tried to be diplomatic and tell him no one is looking at him or talking about him. I've even tried to use examples of other ALF patients that have much worse conditions than Dad but don't let that restrict them from going out, but he's dug in his heels.
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Of course, his answer to the dilemma would be for me to come and take him out since he's "comfortable" with me and I don't mind his oxygen. SERIOUSLY?!?!?
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So (angrily), I told him if he wanted to sit in the room and rot it was his choice, but he was punishing himself.
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Why can't he just wear the stupid oxygen?
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Any suggestions on where I could find someone to help with this? He tends to listen to others. I'm always the bad guy.
You need to put on YOUR oxygen mask, live your life and back away.
What will be will be. If things become bad enough, the AL will call 911. He will be sent to the hospital.
I can tell you that you shouldn't show up and let the social workers there arrange for the State to take guardianship of your very sadly mentally and physically ill father. But that advise will probably fall on deaf ears.
Have you ever had a try of it yourself? It's not like inhaling balsam, you know. It's uncomfortable and cumbersome and a pain. It's possible he ends up with a sore airway and a thumping headache and is plain fed up with it.
It's also possible that the additional drag of having to move himself *and* cart the unit around is more than he feels up to. Can someone take it to the dining room for him, maybe, and get him settled with it once he's seated at table?
Let the AL do what they are paid d*mm good $ every month to do: Provide His Care. Dad will be fine. You will be fine. You might even enjoy your new-found free time, if you put your mind to it.
If Dad has a true health crisis or needs to go to the ER, the 24-hr staff will see to it. If Dad is simply being a brat, the staff is thick-skinned enough to handle him. They might even outsmart him. :-)
Remember, the AL staff gets to clock out after 8 hours and put it all behind them. Dad is not destroying their psyches with a 40+ year Grand Guignol Theatre of mind games and emotional abuse. Dad might even be savvy enough to figure that out and drop the charade.
Funny how our elders can be too senile to write a check or heat up a can of soup, but they are sharp enough to (try to) manipulate the "last man standing." Happens all the time. As evidenced by...... this entire forum!
Don't blow this opportunity to take a break, Tinyblu. I mean it!
P.S. -- This is also a good opportunity to reset how much future time and sweat and heartache you intend to pour into this black hole. (Hence my screen name.) HUGS!!!
Does this ALF happen to have a smoker's area on the grounds? Will they let you do harm to yourself by smoking, but not by making choices about your oxygen? If he refused to take a certain medicine would they confine him to his room? Exactly what choices are you allowed to make about your own health?
Your dad obviously knows this is not good for him. He sees the natural consequences of being very short of breath.
I know very well that you and the ALF have only his best interests at heart. I probably would try to force the issue as you have when he goes out with you. ("It makes me too nervous to enjoy our outing when I worry when you are going to have shortness of breath.")
But somehow it just seems inherently wrong to not allow competent adults to make their own health decisions.
Does that bother anyone else?
I agree with you that it would be absolutely wrong for them to prevent him moving about freely. But then there's the next issue: how much assistance must/can they provide to help him get about without it?
So, it seems that the AL may not believe that he understands what going without the oxygen will do to him. I suppose he could ignore medical advice, if he were competent, but, if the doctor orders the oxygen, I suspect the AL feels they are bound to adhere to that prescription.
I might consult with his doctor and explore Palliative care, which is comfort care only. Then dad would only be prescribed treatment for his comfort and if he is comfortable without oxygen, then so be it.
As it is now, I would fear that the dementia could cause him to be confused and if he was without the oxygen in the dining room, collapsed and injured himself, he might suddenly say where is my oxygen? I didn't want to leave my oxygen behind? BECAUSE he has forgotten his decision. He could change his mind at any time and deny he made that choice, due to his brain not reasoning or recalling what happened. Just my thoughts.
Dragging oxygen tubing around or wearing a portable unit is a pure pain.
Portables are light weight but even then a bag weighing 5 lbs can be uncomfortable
Let him sit in his room. He won't hurt anybody but himself, It's like he's in a timeout.
My FIL HATED to drag his oxygen around. Said it made him look old. "Well," I said, "the fact you won't wear your dentures, and can't hear, and LOOK old make you look old" (I said it nicer than that). He was still "hitting on" women at the Sr Center--but they sure didn't care about the oxygen. Listening to him cough and cough because he couldn't take a deep breath and get oxygenated was FAR worse than the small canister of oxygen and the cannula.
Personally, I simply refused to take him ANYWHERE if he didn't bring his oxygen and a backup. He got the message pretty quickly not to mess with me. I know hubby would bring him here for dinner without it and I'd not say a word, but I used to drive 15 miles to his home EVERY morning to take him to his favorite coffee shop, and if he didn't take his O2 I'd get a call before I was even home saying he was struggling and could I please come retrieve him? Stubborn to the end.
Good Luck & be tough.
And, as someone stated, the AL is really just trying to enforce the doctor's orders. Dad DID collapse at the Memorial Day BBQ at the AL. He was in 90+ degree weather without his oxygen and got very dizzy. When they brought him his portable oxygen unit outside, he threw a fit and stormed back to his room (on a scooter! I can only imagine!) WITHOUT his lunch.
They're NOT restricting him. He's just digging in his heels. His exact words were "I don't want to wear the oxygen". Okey Dokey Mister... sit in your room and rot!!!!! When he gets hungry, the AL brings him food but not before asking him if he'd like to put on his oxygen and go to the dining room.
I'm sure wearing oxygen is not the most comfortable even with the humidifier, but I'd take a tube up my nose over gasping for air any day, so I've resorted to "tough love". Dad's been whining for the past couple of days about how "bored" he is "stuck in the room". I just remind him that all he needs to do is "put on his air" and he can go anywhere he wants. He has a motorized mobility scooter to help him get around whenever he's ready.
In the meantime, I have asked the pastor that conducts the Sunday Bible Study to visit with Dad and assure him that "people aren't looking at him funny (his latest excuse)" or remotely bothered if the portable unit chirps.
...and Dad is currently under Hospice care. Their staff encourages me to just let Dad do what he wants, but I'm NOT going to keep listening to him whine about a problem HE'S created.
This is BEYOND my threshold which is obviously pretty high. I won't be swindled into giving in to a stubborn senior. As a lot have commented, he will be OK. Dementia or not, I'm treating this one like a kid who's being a brat. IGNORE! This is a tantrum plain and simple.
My mother tripped on the O2 cord, falling luckily into a chair, but decided to 'wean' herself off the oxygen. She increased her distance without O2 every day. She also stopped wearing her sleep-apnea apparatus. We chose to let het do what she thought made her comfortable, but then she did not have dementia. Lots of luck getting through this, no matter what you and ALF decide.
I left my cell phone out of ear range when the phone calls started because he chose to stay in his room all day. The staff tried to encourage him to come out, but he refused, so they cut back on the check-ups.
I later learned from the staff that he told them how AWFUL I was... that I was ignoring him and not keeping him company... that I've never treated him like this... blah, blah, blah. He then decided he wanted to go see the "daughter" in California that has mysteriously disappeared after learning that I have full POA and won't give her one red cent of Dad's money.
Yep, he put on his Atlanta Braves cap AND his oxygen and was going to scoot all the way to California from NC!!!!!!
The pastor did visit Dad and got him to come to Sunday School with his oxygen, but the unit started to chirp (which causes Dad to OVER REACT bringing way more attention than needed to the issue), and someone tried to help him. Dad got upset with the gentleman, stormed out of the multi-purpose room and sulked in his room for the rest of the day.
I admit I had an internal battle all day about not coming to Dad's "rescue" or answering the phone (What if something is REALLY wrong?), but he survived the weekend. We'll see if he comes around...
....and MACinCT, Dad is complete no code, so if he refuses and something unfortunate happens as a result, that's the END. Besides, between his stubbornness and the dementia, It's pointless explaining anything to him.