Burnout

karwiy

I'm running on empty. My DH has mid stage dementia and is 02 dependent due to congestive heart failure. He's in a long term memory care facility and I see him every day. He's constantly confused about how to wear the 02 device and calls me about 20 times a day; often acutely confused, delusional, nasty, paranoid - and I try to resolve that  02 is being worn properly and de-escalate, soothe and reassure as best I can. But even without him living with me, I get calls at 4:30 am and in the middle of the night accusing me of being part of the organization and wanting to talk about the state of our marriage. It's becoming all too much. He is on both Seroquel and Zoloft but I think the confusion is really more caused by his low 02 levels. There is no one else to take these calls; he's estranged from his entire first family.  Taking time for myself doesn't seem to be doing much but I try nonetheless. Anybody have ideas on how to  cope with this hell? I'm wide open for suggestions.

T. Slothrop

karwiy,

This does sound like hell!  I don’t have any experience that would illuminate, but it strikes me that few would, since this is a new kind of trial, enabled by the way we are connected through our devices. My DW is losing interest in her phone, and her abilities to work it; but if we were separated as you are from your DH, I can imagine she would find someone to help her call me. So the brainspace I might hope to achieve will be shrunk again. 

What happens if you don’t answer?

harshedbuzz

I am sorry you both are going through this.

In midstages, he's probably living very much in the minute, so not answering the calls might be one strategy. Some folks get an inexpensive burner phone for their LO to call. On it they leave a personalized calming message about how they love the PWD and will see them soon. This allows you to return the call after you've had your coffee, tea or adult beverage of your choice.

Another strategy would be to remove the phone from his room. If it's a cell, you could remove yourself from the contacts; perhaps he's lost the number. Since it's just you, chances are he isn't staying socially connected with it. 

I suspect your are spot on with the O2 being an issue. My mom- who does not have dementia- "plays one" when her O2 levels are bad from pneumonia, her CHF or COPD. She starts with mild paranoia and conspiracies, dwelling on the negative and even conflating tales which was my dad's- who did have dementia- MO. I would speak to staff about routine overnight checks to be sure he's being compliant on his O2. Otherwise, this might be a situation handled more effectively in a SNF.

loveskitties

Is your LO using a cannula to deliver the O2?  

If so, is it possible for the care facility to use skin friendly tape to keep it in place?

If he is actually removing the O2 delivery device, then the care facility needs to be made aware of this and work with you to determine how best to handle the situation.

If he is using the device but feels he is not getting enough O2 and therefore questions how he is wearing it, perhaps he needs his O2 levels to be assessed.  He may need more than what he is getting.

larrymanire

I got my DW a $14 Oximeter so she can monitor her O2.  Her pulmonologist says she only needs to use her O2 (on a setting of 2) if the Oximeter is under 90% during the day but should always use it at night.  Because during the day if you overuse it it dries out the nasal passages.  This would give him a way of seeing what's going on with respect to O2.

karwiy

My thanks to each and every one of you for sharing your wisdom and experience. Your generosity and support leave me with more tools and courage. So many of you are dealing with so much more. My gratitude - The phone has to stay - he panics if he can't reach me resulting in a heart rate of 140bpm  at times and I never know if it's an emergency or not. Sometimes a nurse or aide will use his phone to call me. The memory care facility is supposed to be a SNF too but it's been tough to recruit and retain staff during Covid, so available and efficient help leaves much to be desired. His cognitive impairment precludes him from properly wearing the 02 cannula at times, let alone monitor his level with an oximeter. He is often like a toddler. I'll definitely give  the tape a try. Again, my thanks to all of you.

loveskitties

Larry, I know what you mean about drying out the nasal passages from the O2.  As my sister was in the last days of cancer, she was on O2 constantly.

There is an attachment that can be placed on the O2 canister which "mists" the O2 which helps prevent the drying.  You might want to ask about it.

DrinaJGB

There is also an over the counter saline gel called AYRE which helps in keeping nasal passages moistened.