Not Sure if it’s the End

LamBee

Hi all. Been caring for my aunt for almost 2 years. She’s almost in her mid-nineties and came to live with hubby and me close to 2 years ago. It’s been a rough ride, as I’m sure it has for many, here. My Aunt is almost fully incontinent now, and has frequent delusions. I have a little bit of a medical background, but sometimes am perplexed. She seems to go back and forth from being close, or ready to transition, to being fairly lucid, in the past few days. I’m burned out, and not sure what is happening. Last night was a hard night. In the space of me doing a few dishes, she got herself fully dressed with lipstick on, and started rushing around saying we were all just out to dinner, she was at “the place,” and needed to go back or she would miss something. I went along, and tried to calm her pace, but she was adamant that people were waiting for us, someplace. Then, was frustrated and angry with me that I wouldn’t take her to the place she had in her mind. It took a few hours for her to stop pacing, I could not distract her.

This morning I couldn’t find a radial pulse at all, she has been very sleepy and got up at 2:30 pm. When asleep, her breathing has been more shallow than normal last 2 days, with frequent pauses and no breathing for sometimes 30 seconds or more. When she finally woke, she was personality wise almost like she didn’t have dementia. She wanted to get out of bed, and sat in the living room with me. She isn’t talking much, and didn’t want to eat, but asked for coffee. Her eyesight seems to be getting worse, and her eyes are watery much of the time. She has not qualified for hospice, and does not say she is in pain. She seems to be phasing back and forth between showing signs of end of life, and then rousing back to some level of alert consciousness. Has anyone experienced something like this? I’m trying to keep her comfortable and not force fluids or food. I’m just trying to get an idea of where she is, or what to expect. Thank you. 😊

Quilting brings calm

How does she not qualify for hospice when you feel that death is imminent? Call them again

LamBee

I know 💗 I’ve had them out here multiple times, they will not qualify her until she meets criteria. They said last time that because she was walking on her own, and still feeding herself, it was too early. 😔Nevertheless, I will call them again, thank you.

fmb

@LamBee

If they refuse to admit her again, call another provider. What you are describing sounds like it could be episodes of terminal lucidity. (I am not a medical expert by any means.)

My DH has been fluctuating in a similar mode for the past six weeks, with a 3-week episode of paradoxical lucidity followed by a week of low blood oxygen (88-92%), greatly reduced lucidity, and other concerning signs. Last week he was barely responding to me, eating very little, and sleeping 20 hours a day. Today he was more lucid and stayed awake from breakfast to lunch. He is in hospice care, and his nurse says he is not transitioning yet. She did say that apnea during sleep is common, and not to worry about it unless he is having apnea while awake.

I'm as perplexed as you are as to where my DH is at in the progression.

LamBee

Thank you very much, @fmb. I’m sorry to hear you’re going through a measure of this, too. Thank you for your insight. Wishing you and your DH strength, peace, and comfort, and hope for more answers, soon.

LamBee

As an update, my aunt was up and back to a little better than her baseline, this morning. Her vitals were better last night, and she retained her lucidity until bedtime. She was doing so well, that she was sitting up in her chair, nibbling on her Klondike Krunch bar, and watching the movie “Twins” with me. She was jovial, and lucid enough that she understood many of the jokes and laughed with me.

I am happy for the good days, when they happen. She was already solidly in mid-dementia when we took her in. Her baseline has been at about 6e stage for the last 3 months or so, once she started having more incontinence. She seems to be progressing (since she’s been with us) in a two steps back, one step forward type of way, overall. She’s hovering in that place between 6e and 7a right now. Today is a good day, but I expect the next month or so might have some changes.

@fmb How is your DH faring, today? Hope it is a good day for you both 💗