First Time I Couldn’t Wake Dad Up

ARIL · June 6

My dad is in MC (stage 6, age 92) and has been sleeping more and more this whole year. He is almost always in bed asleep when I visit in the late afternoons. I am told he is often up for a few hours in the mornings. I work full time and cannot visit weekend mornings either. Usually he wakes up when I arrive, and I get him up and help him get ready for dinner (dressing, shaving, etc.). Two or three times lately I have not been able to persuade him to get up (which has seemed OK), but today for the first time, I was not even able to wake him up. Usually he responds to my voice, but not today. Turned on the lights. “Hi, Dad! It’s [Name].” I shook his shoulder lightly and called his name. Nothing. He was breathing normally and not as shallowly as he does sometimes.

I left him alone for a half-hour or so and then tried “arriving” again: opening the door, letting it close with a little noise, “Hi, Dad!” Nope. The charge nurse came by to check on him, since she was concerned that he hadn’t been up at all today. She said she wanted to take advantage of my presence to try to get him up, since he needed to shower.

She was able to wake him up (really kindly and respectfully—I was impressed), and the two of us together cajoled him into getting cleaned up and to dinner. She was amazing with him. But wow, how weak he is. He needed assistance standing up from a chair. That too is new.

I am less distressed by all this than I would have been even a few months ago, but by the time I got home I felt exhausted. And sad. Yet another “first time” at another point of decline.

Another person posted about timelines…and I am thinking in the same arena. How long? How much more of this will he/we/I endure?

psg712 · June 6

@ARIL, my heart goes out to you. My mom is a few steps farther down the road than your dad is, and even at this very late stage there are piece by piece losses of her. The day we could no longer get her out of bed. The day she stopped smiling when she saw me arrive. The day she no longer opened her eyes. And yes, even the day (yesterday) when she didn't resist being turned in bed. She is so close to the end but still hanging on. I want it to be over for her but ... the finality of it's OVER is scary. Even though I believe that she will pass from here into the arms of God. She's still my mom, even though she hasn't been fully herself for a long time. It's a weird kind of limbo right now.

And yes, I understand the exhaustion. Even though there's little to DO anymore but sit and watch her breathe, bearing witness to her last days. Or weeks. Hospice told us 2 weeks ago that she had only days, but here we still are. My sister is coming to town today. Perhaps mom is waiting for her.

I hope that your dad's journey is as gentle as possible for both of you.

jen ht · June 6

https://alzconnected.org/discussion/76222/first-time-i-couldn-t-wake-dad-up

@ARIL and @psg712 I am thinking of you both so much. I hope you can feel the loving support being sent your ways. 💜

ARIL · June 7

Thank you so much. Last night after visiting my dad (things went better, though still hard), I sat in my car and opened this website. That is certainly not the time when I normally look at it, but I felt the need. After reading what you both wrote, I felt your care and concern palpably. I teared up to know that people I have never met understand what I feel so clearly and are willing to reach out to say so. 🦋

Emily 123 · June 7

Glad you had a better visit. It's tough when these changes show up, and sometimes they may be caused by something like a cold or flu that our person can't tell us about, and they get better. It's so hard to know.

For my mom, the increased dozing off and less energy started about 6 months prior to her passing, and otherwise was slowly starting to tick off the late stage 6 into 7 boxes, then in March it felt like she was withdrawing —much less communicative, losing her words, then stopped getting out of bed much or eating. Just a feeling of drawing in to herself. She qualified for hospice then. Towards the end of April I think her physical frailty (she was 96) and the dementia caught up with each other.

ARIL · June 7

Yes, @Emily 123, what you describe is what I am seeing: a gradual slipping away, but not a linear progression. Dad is moving toward stage 7, and although he is still quite verbal on good days, he loses words more and more, and when he tries to repeat things I have said, he is way off more often than not. I think this is weakening brain processing, not a hearing problem.

And yes, physical frailty is increasing too.

But for now he still takes pleasure in his appearance, both when looking at old photos and when looking in the mirror. (Go figure.) So I iron shirts for him. It is something I can do.

Thank you for your response and your thoughtfulness.

You have my sympathy; saying goodbye to a parent is always hard, no matter the age or situation.

terei · June 8

At the point that my mom was sleeping like this, we did NOT wake her for anything. If she woke, we offered her food and water…we did not feed her, per her wishes. I assume your dad is under hospice care.

Daisy4U · June 8

I feel your sadness so much @ARIL. I am going through the same journey with my mom of 92 years. Everyone's posts help me come to terms with this time of mourning, although my mom is still living. It is hard to watch her slip away bit by bit, losing a little more of herself every day. Like you, my mom is sleeping more and more each day. Right now, she is struggling to get her words out, and can barely speak. I see the confusion and sadness in her eyes when she sees no one understands what she is saying. I lean in close to hear if only to show her I care and am paying special attention. Her internal light blinks slowly on and off, growing dimmer with each passing flicker. I too wonder how long. I don't want to see her suffer. So grateful for this board. Knowing each of you understands and is walking a similar journey. We try to be strong, lending our strength to their weakness, but the tears are never far away, grieving for what is and is yet to come.

psg712 · June 8

Whoever first called this " the long goodbye" was exactly right. Daisy said it well too: grieving for what is and is yet to come. Now that my mom has passed, it's so easy to second guess all the decisions, but I did the best that I could for her. All of you are doing that too. I hope that even through the fog of dementia, our family members can somehow perceive our love.

Daisy4U · June 8

https://alzconnected.org/discussion/comment/274358#Comment_274358

So sorry to learn of your loss, @psg712. May you find the deepest solace in knowing you did everything you could for your mom.

First Time I Couldn’t Wake Dad Up

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