Thread by @DawnMGibson

The Dude is probably going to die very soon.

The #MemoryCare and our hospice service are managing his discomfort.

We told him that he doesn't have to worry about anything, that he can just rest as much as he needs to.

#Disability #SpoonieChat #Alz

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Waiting for someone to die is a strange thing, like a trip into a parallel universe, outside of time.

Without Penny our house is quiet.

And this moment is extra silent, like when you wake up to a thick blanket of snow in the middle of the night.
#Disability #SpoonieChat #Alz

I think it's the quiet that wakes me up on those snowy nights. Or is it the brightness of street lights and the moonlight bouncing up off the snow?

But that spell is always broken by shovels scraping, blowers growling, or car doors slamming.
#Disability #SpoonieChat #Alz

I baked a carrot cake while we were waiting for The Dude's mother to die of #Alz. She was almost 101.

It was ready to eat when he and my grandparents came back home to tell us.
#Disability #SpoonieChat

The Dude was a big fan of desserts, especially ice cream and pie.

It's weird to think of him not having them anymore.

BTW, if you come at me with heavenly pie...just don't do that.
#Disability #SpoonieChat #Alz

Stopped by the store for deodorizers for The Dude's room. They're doing well with hygiene, but dying does smell.

Went with an apple pie theme, that's his favorite.

We've been talking about his mother while he rests. Not sure if he understands.
#Disability #SpoonieChat #Alz

When my mother was dying I kept a sachet a lime peels by her bed, just incase she could smell herself.

I'd started out with peels from the oranges I'd been eating to keep my energy up, but that wasn't strong enough.

#Disability #SpoonieChat #Alz

The Dude is almost entirely within himself now, which is normal.

The comfort meds are helping him stay relaxed during this process. I'm grateful for that.

#Disability #SpoonieChat #Alz

I got these tic tacs on a whim.
The Dude's mother used to keep them in her purse.

In theory, we'd get these or those strawberry candies with the strawberry printed wrappers if we were good. Mary gave'm to me despite my poor behavior. 🤣
#Disability #SpoonieChat #Alz

From the butterfly garden @ The Dude's #MemoryCare.

Descriptions in Alt Text.

#Disability #SpoonieChat #Alz

Being an advocate with diverse experiences around health and end of life care is useful, but it doesn't make this easy to watch.

#Disability #SpoonieChat #Alz

In protracted end of life situations like ours, the body has a shutdown sequence, countering the innate programming to just keep living.

These symptoms are hard to watch.

I can't tell how much he knows about what's happening or how he feels.

#Disability #SpoonieChat #Alz

My sense is that he's passed a threshold back into himself, to early memories and a childlike status. But there is no way to know for sure.

That's why we keep talking about his mother or other good memories. Lots of our visits have been like that.

#Disability #SpoonieChat #Alz

People underestimate #dementia patients' need for socialization. The Dude liked to be near people without having to engage.

When he started tuning out on our visits we switched over to talking to each other and letting him join in, if it worked.
#Disability #SpoonieChat #Alz

Please don't take these Dude tweets as a sign that I've been a saintly caregiver. This past 3 years've been the most intense stress of my life.

Most of my interactions require a neutral-supportive mask. It's been 3 years of fear and frustration.
#Disability #SpoonieChat #Alz

I've done my best to manage a calamity. Imagine an Airplane remake with a fatigued nerdy church lady with arthritis has to land a wide body jet because everybody who knows how's dead.

She's got zero upper body strength, & lands it with her thighs.

#Disability #SpoonieChat #Alz

The Dude didn't stir when we walked into his room.

He looks comfortable on the pain meds and sedation.

#Disability #SpoonieChat #Alz

Went out to dinner to save energy.

Picked up meal replacements, GI meds, & sleeping pills.

Don't ever skimp on stress management, when possible.

You need to survive even when somebody else is dying.

#Disability #SpoonieChat #Alz

Rest is essential to your health, no matter what else is happening.

"You can't serve from an empty cup," is a popular adage.

That's true, but YOU're just as worthy as anybody you're caring for, of anybody in need.

#Disability #SpoonieChat #Alz

I known that being worthy doesn't make resources fall like manna, but the truth is still true.

Nobody should be devoured by caregiving.

We can reject ableism & affirm the worth of helpers.

#Disability #SpoonieChat #Alz

Going out to dinner felt like a luxury.
1. We have food at home.
2. It's cheaper to eat at home.
3. Maybe we shouldn't spend money on it.

We're too tired to cook or do dishes. Every phone call makes us wince, wondering if it's The Call.

#Disability #SpoonieChat #Alz

Being a #disabled caregiver is strange.
1. It's silly, but people don't know
we exist.
2. People don't get that our caregiving experiences can be all-encompassing.
-We don't have extra energy.
-There's no side hustle.
3. We offer unique insights.
#Disability #SpoonieChat #Alz

One of the #MemoryCare residents called out to me today, asking for my help.

She was in a delusion about loading up a school bus. She was concerned about leaving me behind.

I thanked her for her help.

She seemed satisfied with that.
#Disability #SpoonieChat #Alz

It's taken years to get there, cultivating a certain calm within myself.

I used to get unsettled interacting with more progressed patients.

A minute-by-minute space helps me to be present.

I'm in acceptance now that The Dude is progressed.

#Disability #SpoonieChat #Alz

It still hurts to see any #MemoryCare patients struggling.

For me, their fear is the worst, because sometimes there is no comfort.

But knowing they're safe, well nourished, clean, & receiving enrichment has value.

#Disability #SpoonieChat #Alz

The Dude was a little better today.

I know he can't recover, so it's confusing. But it's good to see him more comfortable.
#Disability #SpoonieChat #Alz

We've missed our chance for a last cake to celebrate The Dude's 89th birthday, but we'll bring him some really fancy pudding.

His nurse & tech agree that he can safely have that.

#Disability #SpoonieChat #Alz

We went out for dinner again.

I wasn't hungry at first, but smelling the food helped.

My body feels like burning lead.
No energy.

#Disability #SpoonieChat #Alz

Sorry, my Alt Text isn't working.
Image description: 2 single serve cups of flan & 1 can of apple pie filling, in a shopping bag, sitting in the top of my basket.

The Dude loves apple pie, but he's off solids. Got this for his upcoming birthday.
#Disability #SpoonieChat #Alz

We dropped off The Dude's accessible drinking cups yesterday.

Seeing him look just like a toddler yesterday wrecked me.

His team did a great job feeding him, but that's hard to watch.

#Dementia caregiving is emotionally bottomless.
#Disability #SpoonieChat #Alz

I can't say what he understands about his situation. He seems calm.

I hate not being able to read his face, to see what he needs.

I hope he's not scared.

#Disability #SpoonieChat #Alz

If he knows anything, I hope that he feels loved, valued, and safe.

If he remembers anything eating his birthday pudding, I hope it's all the beautiful pies his mother made him.

#Disability #SpoonieChat #Alz

We decided to stay home and rest today. The Dude still has all his hospice visits. And has what he needs, for now. And we need to rest.

It's tempting to try for one more this or that, but it's not good for us. We've known him our whole lives.
#Disability #SpoonieChat #Alz

I can't imagine what we could add on now to gild our life together as a family. It's true and deeply uncomfortable.

#Disability #SpoonieChat #Alz

We got another non-update update from our hospice today.

I get that these calls're required & we consented to managing end of life in this system, but nothing makes this easier. There's no comfort.

And yeah, we're waiting for a human being to die.
#Disability #SpoonieChat #Alz

He's going to die soon no matter what we do.

We've chosen hospice to reduce or (hopefully) eliminate traumatic hospitalizations & to manage comfort.
I don't regret this choice.

Maybe I thought we'd all feel some relief?

#Disability #SpoonieChat #Alz

I'm not sure what it will take or who needs to do it, but we need better options for progressed #Alz & dementias. None of this is good enough.
#Disability #SpoonieChat

My mother died 7 .5 years ago.

That was so bad for my spondylitis, but I may have blocked most of that out of my mind, if how I feel now compares.

Feeling this rough shouldn't be surprising, but it snuck up on me anway.

I'm JUST like you.

#Disability #SpoonieChat #Alz

Went to see The Dude and.see if he needs anything. It was not great.
#Disability #SpoonieChat #Alz

We really enjoyed watching an elderly woman pick out her cinnamon roll at Panera.

She looked at the tray awhile, surveying it from all angles.

Then she picked one.

Then she looked again, asking if the other one was bigger.

She was a hoot!
#Disability #SpoonieChat #Alz

Then she gleefully told us that this cinnamon bun was new but also improved, which is not usually what happens.

Honey, truer words have never been spoken

#Disability #SpoonieChat #Alz

Communication about treatment plans, especially pain management is fraught, particularly when many people are involved or when patients can't participate in their own care.

Had to call our hospice's hotline to straighten things out.

#Disability #SpoonieChat #Alz

I'm cautiously optimistic about our hospice's hotline.

I called-they listened.
They promised to quickly deploy a nurse-and she came.
A plan has been proposed.
Pain has been addressed, for now.
#Disability #SpoonieChat #Alz

The nurse was respectful, compassionate, and solutions oriented.

That's what The Dude needs right now. There's no time to fool around.

His pain is treatable and it's unacceptable to mess this up.

#Disability #SpoonieChat #Alz

A breakdown in communication between the #MemoryCare & our hospice service meant that I was back up there today, advocating for adequate pain management.

One piece of paper kept The Dude from his meds, unless I said to give them.
#Disability #SpoonieChat #Alz

Here's what I learned:

1. Try to get essential meds scheduled rather than written "as needed".

2. Make sure they show you the order.

3. Make sure that ALL parties involved have each other's 24/7 phone numbers.

#Disability #SpoonieChat #Alz

Here's the trouble with "as needed" pain meds & advanced #dementia.

1. Somebody has advanced dementia.
2. And somebody else is judging the amount of pain that person is in.

This is not great.

#Disability #SpoonieChat #Alz

Working with co-guardian on tomorrow's visit. Considering reading him a children's story. He responds well to resting while we talk quietly.

Indirect socialization allows him to be with somebody without struggling with what his brain can't do.

#Disability #SpoonieChat #Alz

The Dude is finally resting comfortably.

This took lots of phone calls and advocacy. Which is shameful.
#Disability #SpoonieChat #Alz

The Dude's stuffed therapy dog.

He's totally out of it today. I think we're getting very close.

#Disability #SpoonieChat #Alz

We put these brightly colored butterfly wall decals in his room, for when he's awake.

Dementias are tricky. Too much engagement hurts, so does too little.

We'll engage gently until he dies.
#Disability #SpoonieChat #Alz

My worst fears about The Dude's care have been:
Somebody doing intentional harm.
An accident that causes an injury.
That he wouldn't know he's loved anymore.
That he's scared or insecure.
That he would suffer in ways that we can't do anything about.
#Disability #SpoonieChat #Alz

Our #MemoryCare's nurse is fighting it out for the hospice. Bless her.

All I can say is to keep an extra eye on anybody coming into a residential care setting to provide an additional level of care.

They might dump it off on facility staff.
#Disability #SpoonieChat #Alz

Care needs can skyrocket near the end of life.

Be sure that your hospice or palliative care service is monitoring your loved one closely enough.

This means phone calls & empowering an advocate to keep pushing.
#Disability #SpoonieChat #Alz

Today, I told our #MemoryCare nurse that I'd never done this before.

She kindly reminded me that nobody has. And assured me that she's going to make some calls, get things moving.
#Disability #SpoonieChat #Alz

Managing care in this fluid situation is hard. Everything keeps changing, it never stops.

This is like quicksand-pack of jackals level stress.
#Disability #SpoonieChat #Alz

Spent some time doing unglamorous butterfly stuff after we got home from dinner. That was good.

It's important for me to keep doing something just for me, even though The Dude is suffering.

His needs are always magnetic, but I'm also a person.

#Disability #SpoonieChat #Alz

Things have been so up & down with this hospice service.

Close friends swear by this group.

I still support the concepts of hospice & palliative care, but this experience raises many questions/issues around quality & consistency.

#Disability #SpoonieChat #Alz

This experience also shows me that there isn't enough mainstreaming of #dementia care.

When working advocacy events I always try to tell the system that we're too comfortable with advocacy, when we should strengthen institutions to meet needs.
#Disability #SpoonieChat #Alz

Every aspect of getting care for The Dude involves advocacy, educating medical practices about his needs, what #dementia means.

That's bananas.
#Disability #SpoonieChat #Alz

It's not like he's a peacock that I'm trying to get MDs to do a favor for.

He's an elderly human, with a common brain disease, who can't make himself heard.

That sounds like something systems should be prepared for.
#Disability #SpoonieChat #Alz

On the hospice side, I see that they've got a tendency to rely on NT markers.

Some people don't seem to get that a flat affect or withdrawn state don't equate with pain free or care free.

This is unacceptable.
#Disability #SpoonieChat #Alz

I'm NOT saying to avoid hospice. These deficiencies are evident throughout the medical system.

The Dude needed hospice to manage end of life pain and to avoid returning to the hospital.

Hospice has done lots of what they promised, but...

#Disability #SpoonieChat #Alz

This care is provided in a system that's not made to provide #dementia care.

There is no excuse for this.
#Disability #SpoonieChat #Alz

We're headed up to the #MemoryCare for The Meeting.

I presume that they will tell us that The Dude is in the active dying phase.

#Disability #SpoonieChat #Alz

Our hospice has pronounced that The Dude is officially actively dying.

It's entirely expected.

It doesn't feel great, but it's just a fact.

#Disability #SpoonieChat #Alz