The Tough Part of Being Present With Dementia

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

Sundowners and Alzheimer’s Disease

One of the challenges with having a loved one with Alzheimer’s Disease is sundowners.  Sundowners is a symptom of Alzheimer’s and Dementia whereby your loved one becomes more confused mentally towards the end of the day (hence the name).  There are wide variations of sundowners including utter confusion, wandering, aggression, shadowing (meaning they follow you around), repeatedly asking questions that they do not remember that they’ve asked and rapid mood changes which can range from crying (depression) to fear to stubbornness to restlessness and even to rocking back and forth in an effort to self-soothe.  Not all of the symptoms of sundowners occur every night, nor are they the same for every person.  I’ve written about it before here in case you are interested.

My Aunt suffered from sundowners which was hard on her and on her caregivers.  It always seemed to increase in intensity when the moon was full, when we changed to/from daylight savings time and when the seasons changed.  I think there’s more to outside forces than we may think!

My Mom has occasional bouts of sundowners as well, but confusion is her main symptom.  We were having a conversation recently after 6pm which was lovely when suddenly, her knowledge base fell completely out of her head.  We had been discussing my children, her grandchildren, whom she knew by name, by age and was interactively talking about them when suddenly she interrupted me,

I have to ask you.  Do you have children?

Yes, Mom.  I have children.  You have grandchildren!

Oh my, I didn’t know you were old enough to have children.  How many do you have?  Do they live with you?

I have to say that years ago, I would have been utterly distraught to hear her ask me that question right in the middle of talking about my children when she was fully cognizant of their presence, knowing who they are and having seen them recently.  But I have learned that Alzheimer’s is sneaky and can interrupt a loved one’s knowledge base in a split second, rendering them unaware.  So I simply continued the conversation with her, telling her about my children and reminding her gently of their names.

Suddenly, it was like she was back in her mind and she began reminiscing about them with memories of their childhood that she knew.  We laughed together and enjoyed the connection.  This went on for a bit when suddenly the blip happened again and we had to begin all over.  Then at one point, she was thinking that I was her sister and was asking me if I remembered certain things about her childhood.  But all along the conversation, one part was perfectly clear – my Mom loves me, trusts me and knows my name for which I am ever grateful!  That is the piece of peace that stays with me long after confusing conversations and even throughout them.  My Mom loves me and knows how much I love her – what more can you ask for?

I have to remind myself that it’s just part of the disease.  As I’ve written before, when we stay calm, we can flow with whatever comes up.  It’s taken me a long time to get to this place of peace and acceptance.  I had to get the belief that this isn’t how it should be out of my head and simply accept and be with what is.

I keep her sense of calm foremost in my head.  I keep conversations light and happy.  I do answer her questions with truth when she asks, if I think that they will not hurt her.  But as you have seen, Swinging With Mom sometimes we have to repeat the truth which is hard.  It takes patience, love and a sense of humor to love everyone and Mom is here to remind me to strengthen the bonds of love and acceptance for all who are in my life.  Thank you Mommy!

Shine On!

xo

 

Out of the Mouth of Alzheimer’s

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

You Are Always On My Mind

Everyday without fail, I talk with my loved ones with Alzheimer’s Disease and Dementia.  Most days, I am able to live in their reality, assure them that I am only a phone call away and talk about what interests them.  I can veer the conversation towards happy thoughts and keep them peaceful, even when I’m not at peace.  I can make sure that they are getting the best care possible by keeping in constant touch with their caregivers and going to see them every month so that I can spend physical time with them to really ‘see’ how they are doing because it’s hard when I’m so faraway from where they currently reside.

They are always on my mind, but especially when there’s trouble brewing, like when one of them has a cold, cough and are sick, or when the other one’s sundowners is acting up.  It’s a vicious cycle to get one of them to bed every night and we’ve yet to find a solution to making it easier for anyone.  My Aunt’s dementia revs up at night especially and I’ve gotten the 9pm phone calls asking for help in talking with her.  As a strong-minded woman, she’s only gotten more steadfast in her beliefs that nobody puts her to bed but herself, and only when she’s good and ready (but…she’s never ready to go to bed any night of the week).  That’s the problem.

Dementia is sneaky in the way it works on the brain and the personality of the person with it.  It robs them of clear thinking and exacerbates the strong-willed portion which in turn makes it harder to help the patient to understand what is going on.  Anger ensues as the dementia takes hold more and more because the patient gets frustrated by their own thoughts and brain because their thinking gets muddled.  It truly breaks my heart to experience this as a relative, let alone to know that things don’t get better with dementia, they simply slide deeper into worse, plateau for a bit of a reprieve and begin the descent again in time.

I guess I’m feeling sad and lonely today because I’m feeling the losses more acutely these days.  I feel for my loved ones with the disease as it’s frightening for them to have a ‘crazy head’ and not remember the simplest things like what they had for breakfast or where they live now.  Sure they can carry on a decent phone conversation for a bit and many times can focus well.  But there are times when their confusion breaks my heart in ways I never knew it could break.  I know what their losses are, but much of the time, they don’t realize what they don’t remember…but I can never forget that they don’t remember and it saddens me.  Sometimes the loss cuts me deeply to my core and I hang on with all my might to the good of the day, to the gratitude that they know who I am and say they love me and hear me say it back.  Because I know, that one day it can happen that they don’t know me anymore and then the grief will begin in earnest for me, for there won’t be any going back in time, except in my memory.

If you’ve had a loved one with this mind-altering disease, then you probably understand the sadness I’m feeling today.  It’s awful to feel so helpless and to watch loved ones’ minds slip away.  It’s hard to be the strong one, to manipulate conversations to happy thoughts and to never be able to share that I’m not fine sometimes.  With them, I am fine all the time, all is well, I tell jokes, make them giggle and I repeat that I love them over and over until I can see them in person next.  I fix whatever needs to be done to make them more comfortable.  I check up on them with the nurses and I make life easy for them as best as I can.  I do it all with love, but sometimes I wish I could simply be taken care of myself as I take care of them.

Shine On!

xo