Spillin' the Tea at 503

I’ve learned there are three P’s associated with dementia: Patience, Perspective and Persistence.

Patience: Because there’s no rushing the moments – or the moods – that come with this disease. Some days, Big Guy is cheerful and calm; in fact, we’ve had several consecutive, really awesome days. At other times, he’s confused or frustrated. That’s when patience becomes an act of love (and this is sooo hard to remember!). We’ve learned that gentle redirection works better than correction – a change of subject, a little humor or putting on some music can turn frustration into a little calmness.

Patience also shows up in the everyday routines. We wait for Dad to come into the dining area to eat and without fail, he’ll decide it’s time to go to the bathroom right as we’re about to sit down for a meal. It’s like his internal dinner bell rings, not for food, but for a bathroom visit. It’s frustrating because some meals were meant to be eaten immediately following the cooking and preparation. However, we’ve learned to laugh (sorta), reheat plates and accept that mealtime runs on “Big Guy Time.”

Then there are moments of confusion that test both patience and compassion. This morning, he was fully washed and dressed – hair combed, clean clothes on, everything perfect – and about an hour later, he wanted to do it all over again. He had forgotten he had already been through the process earlier this morning. It’s hard not to remind him, but it’s kinder to just let him start again or gently say, “You look great, Dad; you’re already ready for the day.” Sometimes patience means letting him feel useful, even if it’s for the second (or third) time.

Perspective: Because caregiving for someone with dementia, especially when it’s your own parent, changes everything. It’s not like caring for a stranger or someone who isn’t related by blood; there’s history, emotion and love woven into every moment. You see flashes of the person they were and sometimes that hurts more than the forgetting. That’s where perspective comes in, learning to focus on what still is, rather than what’s been lost.

And part of that perspective means letting go of ego – which is especially hard for me. When you’re caring for a loved one, it’s easy to take things personally – to feel rejected, frustrated or unseen (and not just because of his macular degeneration). But dementia isn’t about you. It’s about them, their brain, their reality. Letting go of ego frees you to love without needing recognition, to forgive quickly and to meet them where they are instead of where you wish they could be. That’s something my daughter Stephanie said to me once about trying to connect with our employees – I find it useful everyday here.

Persistence: Because this journey takes endurance. It’s showing up, again and again – through repetition, exhaustion, confusion and even the funny moments we never saw coming. It’s holding on to love, even when it’s one-sided, because that’s what love does.

Some days are long, but every day still holds a little light. And that’s what the three P’s are really about: Patience in the rough times; Perspective in the heartache; and, Persistence through it all.

Three Spirits!!!

This week, we were blessed with the visit of a few of Anne’s grandchildren: Mason, Julie and Grant. It was great having them running around the house for a couple of days and Nanna & Big Guy enjoyed them being here, as well!

Of course, being with Uncle Jerry, there was plenty of candy, cookies, cakes & pastries to go around!

Digging Deep

The last few days, Dad has been digging pretty deep and pretty often. Let’s just say his nose has been working overtime, or rather, his fingers! It’s been about two weeks since his last cauterization, so we’re probably coming up on another one soon.

Dementia brings a lot of unexpected routines and this one has become ours. There’s an army of us trying to remind him gently, but he’s committed to the cause. If persistence is one of the three P’s, he’s the poster child.

We do what we always do: tell him to stop picking, get frustrated, clean up and move on. This morning, however … I was feeling especially creative. So, in a moment of deep (?) thought, I penned this:

A morning of fun, we all had
Breakfast, laundry, Dad getting mad
He hates being told to stop picking his nose
But the result is blood on his fingers and clothes

Trish keeps saying “hands away from your nose”
But we know what happens, we know how it goes

“I must pick my nose, I must dig deep,
I must pick my nose, whether awake or asleep
There is blockage up there, I must get it out
There is blockage up there, of this there’s no doubt”

“Your nose is bleeding now, your fingers are all red
I don’t understand how there’s blood left in your head!”

“See” he said, with conviction and pride
“I told you there was something blocking inside!”
“I must get the blood out, I think it’s a clot
I don’t think it’s your everyday snot!”

“You’re right,” we said, “it’s not your everyday snot!
“It’s blood,” we said, “and it’s quite a lot!”
“It’s my mission in life, before I am dead
To root out this terrible disease in my head”

“So, I’m going to attack it the only way I know how
Using the tools God gave me, my fingers for now.
I’m going to dig deep, as deep as I can
To remove what’s made me a different man”

“So onward and upward into the nose you go
Sticky, Licky, Pointer and Joe.
I’ve named all the soldiers in the NP brigade
Pinky, Stinky, Ringo and Wade”

“Up through the septum and into the brain
Nothing to lose, so much to gain
They’ll cure dementia, this band of pros
And all they did was go up through the nose!

That’s all for now, but I leave you with this thought by Helen Keller:

 “A happy life consists not in the absence, but in the mastery of hardships” – Helen Keller