Tag Archive | patient confusion

The Tough Part of Being Present With Dementia

thetoughpartofbeingpresentwithdementia

I’ve told you before that I have had loved ones with Alzheimer’s and Dementia.  If you’re a caregiver or relative of a loved one with the disease, you probably understand more than most people.  Because it’s hard when they get confused.  It’s unsettling when they live in the past.  It’s sad when they don’t remember.  It’s a gift you give to yourself and to them when you just stay present in their world, however it is, in that moment.  But the part that hurts the most is when they admit that they know that they’re confused.

To me, that’s the toughest part.  To witness their fear, their grief, their feeling of being lost when they blip into the present with that knowing.  I’ve written about it before here.  As many times as we’ve had these moments of realization that they vocalize, it’s still just as heartbreaking to me as it was the first time we talked about the disease.

I can fool myself into thinking that they are just in their own world, safe and sound, knowing that they are loved.  For the most part, that’s how they live.  But for the blessed few times that they are able to articulate that for this moment in time, they know that they are confused, that the words that they want to say are fleeting through their minds at rapid speeds and don’t always make it to be spoken, well, it just haunts me.

I visit a memory care facility often and have become friendly with many of the sweet residents.  We interact during every one of my visits and I have come to enjoy their company as well.  Each with her own distinct personality.  Each with her own level of understanding.  Each and every one simply wanting to be noticed, to enjoy human interaction and to be shown love.

Some are like the forgotten souls who simply exist and are cared for by strangers who love them.  Some of them don’t get many visitors which makes me sad.  Some have daily visitations from family who they don’t always remember.  Some have bonded with the other ‘golden girls’ with whom they share meals and others are simply existing separately.

The levels of understanding and interaction are as varied as the people themselves and with memory care illnesses, they are changeable at a moment’s notice.  One must continue to flow with the present state of mind and ability in order to connect with them.  Being a caregiver requires incredible patience and caring.  It’s an exhausting job, but one that is so gratifying.

I’m sorry I’ve gone off topic again. The words simply flow out of me when I write about the disease.  For it’s not just my loved ones who have it, but an increasing number of people in my life now.  There’s a bond among those who have loved ones with the disease.  We understand what we’re enduring and we share the ups and downs of the journey as it unfolds.

Alzheimer’s and Dementia keeps us on our toes with its ever changing fluidity.  One piece that remains constant is The Presents of Presence and the peace that comes with our choice to embrace this precious moment in time, every time.

Shine On!

xo

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Out of the Mouth of Alzheimer’s

outofthemouthofalzheimers

Recently I had a precious moment with a loved one who has Alzheimer’s Disease and Dementia.  It came quite unexpectedly as our phone conversation was in the evening which usually brings sundowners for her which means she can become more easily confused.

But on this evening, the woman who spoke to me was a voice from my past, her voice quiet but firm, yet with a softness for which I had hungered for a long time.  My Aunt spoke with me and I sat ready listening with my heart.

At first, I thought that we would just chat, I would make her giggle and then having connected in the only way she has been able, we would say our goodbye and requisite, ‘I love you,’ at the end of the conversation.  But instead, I received a gift that we shared.

She told me that she was happy that I could understand her as it had been hard on her for a long time.  “Words don’t seem to come to me,” she explained in a resigned voice.  “And I can’t say what I want for I don’t know what I want to say.  It’s been a long time since I was able to be understood.”

I waited patiently, stunned by her admission ~ for the last few years, we haven’t been able to have this type of conversation because she simply hasn’t been able to share how she’s feeling.  Words to even express pain weren’t readily available to her, instead a grimace gave us the inkling that something was wrong.

“It’s like I can see the words, but I can’t reach them.  I get confused easily and then everything vanishes.  My brain just refuses to work like I want it to anymore.  I think that I want to say something and then the thought is gone and I just can’t remember what it was.”

I listened with my heart and felt through the phone her ability at that moment to tell me what was going on with her.  She was strengthened by sharing with me and I am ever grateful that we had that time of lucidity together for it had been a long while.

We had a few giggles as elder sisters can when we talk about our younger siblings.  We’ve always had that bond and it was strengthened for a few minutes during our conversation.  In the end, her sister was getting antsy to talk with me, so she explained that she would give the phone back to ‘the baby’ (aka baby sister) and we giggled.

She thanked me for always talking with her and for being her niece.  She told me that she was glad we had a chance to talk and that she knew we may not be able to talk like this again.  I promised to continue to try to translate for her when the words didn’t come easily again.  I could hear us smiling together as she said, “I love you.  I love you with my whole heart.  Please remember that,” and I repeated the same back to her.

She handed the phone off to her baby sister and the moment was over.  When I hung up the phone, tears continued rolling down my face for I knew, in my heart, I had just been given a precious gift which I would never forget.

There was no pity party invite when she told me what was happening with her and how aware she was at that moment in time that words, thoughts, and understanding escape her.  She didn’t ask why.  She didn’t make excuses.  She only wanted to share with me how she felt and I was there, a ready listener to receive her message.  A true moment ~ The Presents of Presence. ♥

And isn’t that what life is all about?  Being there to listen and connect with a kind, loving heartlight?

Shine On!

xo

There’s No Place Like Home

there'snoplacelikehome

“There’s no place like home” ~ Dorothy in The Wizard of Oz

With Alzheimer’s Disease and Dementia, many patients get confused towards the end of the day and want to go home.  It’s not necessarily to the last home they inhabited, but to their childhood home, even though they seem to mix them up in their minds.  Many times during a sundowners episode, my Aunt will want to ‘go home’ to her childhood home, believing that she needs to feed her Mama and take care of her siblings even though most of them have passed away.  She was a caregiver until the disease took her mind so I believe because the role is so ingrained in her, she returns to that role time and time again.  Then again, many times she believes she is home in the place where she now resides.  It is confusing to us all how her mind works and reworks reality as time goes on.

When it is explained with kindness that most of her family have passed away, she is saddened by the news, explaining that ‘she didn’t know,’ even though she has been repeatedly told this information.  Many times distraction helps to alleviate her need to ‘go home’ without having to sadden her unnecessarily about her loved ones being already passed away even though she was present during that time in her life when it happened.  Intentionally we use distraction instead of reality in order to ease her mind and worry.  Living in her present is more beneficial to her than repeatedly hurting her with sad news that will not stay in her head.

Weather, barometric pressure changes and moon phases all play a part in the severity of sundowners.  Loved ones with sundowners get agitated easily at dusk and the need to go with the flow of their thinking is crucial.  Lucky for us, my Aunt has a mouth full of ‘sweet teeth’ so chocolate kisses help immensely when she’s not in the mood to put on her pjs or go to bed.  A few delectable chocolate kisses on a pillow make for sweet dreams and a calmer patient when she’s irritable.  Patience is key as well since rushing a patient simply doesn’t serve the situation since we are on ‘their time’ and not our own.

Do you have a loved one with Alzheimer’s and Dementia?  Do they confuse home as well?  Do they return to their long-term childhood memories easier than the short-term of the last 10+ years?

For me, home is where the heart is and I wish yours to be safe, happy and filled with love.

Shine On!

xo

 

 

*Photo Credit from PrettyCleverFilms

Family is everywhere!

familyiseverwhere

I called the Memory facility yesterday where Aunt M is living.  When I asked the head nurse how she was doing…

“Oh Miss M is doing fine.  She’s got a new friend now and they eat every meal together.  He’s a new resident, got here about 10 days ago.”

“Really?”  I was surprised to hear this, “How wonderful for Auntie M!”

“Oh yes, they are really enjoying each other’s company.  They walk down the hall holding hands.  If she’s down the hall and he can’t find her, he calls to her and she answers him.  It’s just so cute to watch!”

“Are they kissing?”  I just had to ask.  I mean, really?  She’s holding hands with some stranger walking down the hallway?  Wowsza!

“Oh mercy no!”  She exclaimed laughing!  “They think they are brother and sister!”

“Brother and sister?” I asked incredulously.

“Yes.  Did Miss M have any brothers?”

“She had 4 brothers, but they’ve all passed.”

“Well, she and Mr. H believe they are brother and sister, even though they aren’t related.  I just wanted to let you know in case she starts talking about him.  Hold on a minute and I’ll go get her to the phone.”

~~~~~~~~~

“Hi Auntie M!  How are you?”

Our conversation went along swimmingly as usual.  Until she stopped talking with me and asked me to hold the phone and I overheard her talking to ‘her brother.’

“Tom, what are you doing?”

“I’m trying to get outside to enjoy the pretty day out.  But the door is locked.  Did we lock the door M?”

“Tom, I don’t remember if we locked the door.  Just unlock it.”

“I can’t seem to figure out out to unlock it M.  Oh wait, here comes that lady, I’ll ask her.”

“Tom is walking away with some lady I don’t know.  I’m sorry.  I can talk with you now.  Tom needed my help with the door.  It was stuck.  I guess we locked it last night.”

~~~~~~~~~

I couldn’t help giggling and smiling with gratitude.  Yet again, I witness how the mind works.  It makes a comfortable reality for us even when our reality is anything but comfortable at the time.  Here are two strangers who have found the comfort of family and agreed to its loving embrace.

It’s funny that he calls Auntie M by her name and yet she calls him Tom when Mr. H’s name isn’t that at all.  I love how he answers to Tom and how they believe they locked the door last night.

Dementia and Alzheimer’s is challenging, but also has its sweet moments and giggles.  I just had to share a little giggle with you.  We are all family ~ what a gift!

Shine On!

xo