HELP! I don't speak dementia.

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So, as typical with dementia patients, my Dad gets easily confused and exaggerates / makes up things in his head. I can't tell you how much time, energy and money I've wasted on a wild goose chase on something he THINKS is happening. His most recent meltdown is over his portable oxygen concentrator that he wears to the Adult Day Center three days a week. According to him, it shuts off before he arrives to the center (a 20 minute drive at most). IF that is the case, it could be that it's not charging properly at night. He INSISTS on plugging the unit in himself, and with his sight (legally blind) and the dementia. It could very well be an issue of him not plugging it in properly. I've asked him to have his favorite nurse check the machine (waste of time to ask him anything) and I've placed a sign ON HIS DOOR asking the staff to verify that his concentrator and motorized scooter are plugged in when they give him his PM meds. I have no idea if this is happening, and they have shared with me that he won't let them plug it in. He wants to do it himself. So... if that's the case, he's getting in his own way (again). I called the Adult Day Center and they said that his machine is working fine when he arrives, so it could just be that Dad doesn't FEEL the machine working and assumes that it has shut off, but this causes a LOT of problems. He gets upset thinking that the machine isn't working which exacerbates his breathing even more. Then comes the repetition. He calls and calls about it and I just want to tell him to let it go. There's no way to tactfully say... it's in your head, but I think it is. However, if it's NOT in his head, this could be serious because it IS oxygen. I've tried to call the ALF staff myself just to get them to run up and check the machine, but 1) It's hard to get through at night and 2) I'm getting in trouble at my second job for being on the phone trying to handle this. I hear the advice loud and clear that Dad may be at NH stage, but I'm not so sure. They say he is a "highly functioning" dementia patient, and compared to what I've seen in NH's, Dad is not THAT sick. Besides, I can't afford NH's or a Boarding Home (non Medicaid). I can barely afford where he is now. I think this all comes down to "I don't have the patience to deal with him" and it makes me feel AWFUL. I'm starting to HATE every single minute of this process which is pretty sad because I'm sure when the inevitable happens, I'll miss these times (at least that's what everyone tells me). Please tell me that I'm not the only one that sometimes just wants all of this to be over!!!


Tinyblu, the way I look at this, if his oxygen is shutting down, it would be doing it every day not just 3 days a week. Or it could be that the line gets twisted while he is riding in the car/van. Does the oxygen unit has an alarm if the oxygen shuts off?

Can someone come in to "fix it" and maybe that will help clear his mind that there is a problem with the unit?
Who is telling you that he's a high functioning dementia patient? On what facts do they base this? He is having delusions about his oxygen, having meltdowns and resisting care.... Why do they think that the adult day care is helpful if when he arrives he has meltdowns and is upset about his oxygen? Don't they have activities at the AL that will entertain him?

Is he in a regular AL or Memory Care? I find it odd that they think he should be able to be in charge of medical equipment. With poor vision, dementia, and resistance to care.....I'd explore having more hands on care. With the true nature of his contentions being imagined, I might alert the staff and let them resolve it. How is able to call you at anytime? I'd confirm that the staff is ensuring that the oxygen is working properly.

I might have a team meeting at the facility to get a plan in place for how his contentions about the oxygen can be handled, so there doesn't have to be so much stress over it.
Sadly, none of us speak dementia. Your dad's reasoning is perfectly fine, to him. He can't hear himself and doesn't know that's he's being repetitious, even annoying. That's what happens with dementia.

He's already in an ALF? Or a memory care facility? Let them do their jobs and handle these seemingly (to us) silly things. That's why they're being paid. The idea that you have someone "fix" the oxygen is great, but would he remember that? My mother obsesses over one thing, once that's fixed, she's on to the next thing, which is equally important to her in "worry-worthy".

I also wonder how he is calling you day and night? A big part of having him living in a care facility is that you SHOULDN'T have to deal with his problems all day.

I'm sorry for your dilemma--you are not alone in dealing with a parent with dementia. It's a new ballgame for me, none of my "ancestors" had it--but Mother is beginning to show it--and it's like a new person to deal with each time I see her.

Good Luck.
Hi all.

So, in the evenings, the ALF staff is often in rooms with other residents and away from the phone at the desk to "fix" Dad's oxygen. I wish there was some way to encourage him to use his pull cord which will send them a radio message that he needs help. In the case of the pull cord, I don't think it's dementia, I think it's being stubborn. He understands what he wants...

...and I've looked into non-Medicaid (they're disgusting and been in the news lately in my state for neglect) Memory Care facilities and we can't afford them.

I think Dad is considered high functioning because he still recognizes people (he just gives them horrible nicknames like Lard A**, Fat Gal, Dumbo, etc. SO EMBARASSING), and "hides" a lot of his issues. He can play superman with the best of them.

I mistakenly bought Dad a special LAN line phone a couple of years ago that has 9 "buttons" where you can place a photo. You can then program the "button" to speed dial the person in the photo. Since Dad can't see well enough to distinguish a photo, I use a blue piece of construction paper for my phone number. He knows to "mash the blue button" to call me.

As a result, I've created this monster. Instead of even attempting to tell the staff something is wrong, he just calls me. They try to encourage him to tell them what's wrong, but Dad is a stubborn old bird.

In fact, the ALF staff has now really started to enforce his "wear your oxygen at all times" rule (at meal times, etc). but Dad doesn't WANT to wear it, so he's been staying in his room ALL DAY LONG and complaining about being "lonely".

So, I don't think he's having problems with his portable at all. These issues don't seem to be a problem when I take him to breakfast on Saturday mornings. Coincidence? I THINK NOT!!!

I'm just over EVERYTHING at this point. Another unproductive workday because I've spent most of it trying to determine if something really IS wrong with Dad's machine.
OK,, so get rid of the phone.. tell him is died,, whatever it takes!
I know it's frustrating. It can keep you on edge all the time. I would try to accept that at some point, the idea of the person being stubborn may not be helpful. This suggest they can do something, but refuse. There is a point where their initiative to do things departs. That's why some seniors with dementia fall and lie on the floor for hours with a button or phone within reach, but, they don't press it because that part of the brain that allows that to happen is damaged and they just can't do it. It's not about being stubborn. So, I would just take it that he's not going to regain the ability to ask for assistance from the staff.

As your dad progresses, some of these issues may work themselves out. I can just say that most of the problems that I encountered were due to the LO needing a higher level of care than the facility could provide.
Sounds like you are Superman, doing whatever you can to make things better. No harm in being proactive. Also sounds like Dad is smart and trying to think through things as best he can. All the objects, phone, oxygen concentrator, other seem to cause confusion, but he needs the oxygen for certain if having lung problems, so that is a top priority. Seems like I hear reference to adult living facility and then adult day center. Is this the same place or two different places. Seems like with the lung/oxygen ongoing issues and the necessary cost issues, and trying to keep tabs on him, this is not relieving stress for either of you, which is normal. That is dementia, I think. Hard to communicate with person diagnosed in any phase of dementia when they are having processing or cognitive issues. Seems like new approach could help, but that comes with rest and focusing on what you can accomplish this month. Sounds like you need something to change to make things better for both of you, so figure out what that would be with the least resistance. Can't read, can't hear, hard-time breathing. That leaves smelling/taste maybe and touch. So hold his hand: touch, e.g. figure out what makes him feel more safe and repeat. Maybe that helps. Sounds like he is having problems with his senses, but doing his best, which at times is not up to par like he used to be able to do. Rest, and even Superman takes a few days off ;)
Tiny, turn your phone off. Call your father at regular times that suit you.

Look, if there was really anything wrong with the oxygen machine, and if the oxygen were that critical to his health, you'd know by now wouldn't you? I know I sound callous, but work it out - all these crises and no obvious ill effects? Once your father gets your voicemail enough times he'll soon call on the staff. Again, callous, I know; but they're the professionals, and you can check up on him as often as you like.
Tiny, sorry you're going through this. I really get it. My 81 year old mom lives with me full time. I am an only child. She has RA and her hands a feet are deformed. Her dementia is getting worse and she lashes out at me, which makes me mad and I tell her to stop treating me bad and walk out, but then I'm torn with guilt cause I know she doesn't mean it. It's so tough. I have cameras all in the house where I monitor her. Lately she's been saying that she calls me but I don't come. I swear I've had camera and speaker on her and she has not called me. She tells people I don't take care of her, thank God they know me well enough. Tiny you're not alone, I would like this to end also and I feel guilty for feeling that way. This season sucks.
Can you get him a pulse oximeter - they run about $15. Any time he's worried about his O2 not working, he (or someone else) can check his 02 level and if it's over 90, he's fine.

Keep the conversation going (or start a new one)

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