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

 

Still Here…But Barely

I’ve been dealing with a few relatives who have Alzheimer’s and Dementia lately and it’s been pretty hard ~ for them and for me.  It’s amazing to me how quickly this disease can rob our loved ones of their basic mental capacity let alone complex thinking.  But what remains, at least for the ones I’m taking care of, is love.

They know I love them and I know they love me.  So far, we are blessed that each recognizes family members even though they don’t quite know all the details.  Most information seems new to them at times and yet at others, they are quite cognizant of what has occurred recently in their lives (which has been another relative who passed away).

Childhood memories fill their conversations along with much giggling of good times shared for which I am eternally grateful.  Stories are repeated, almost to the letter in a conversation, but the giggle at the end remains the same.  It is the giggling that I relish when they retell their stories.  It is the frustration that I continue to keep at bay as much as possible, dredging up as much patience as I possibly can to answer repeated questions in a simple way in hopes that they can keep the information for a bit longer this time.

But I what I loved the most after spending time with them and getting 2 sisters together for a few days was the love and laughter that they shared even though both are affected by those diseases.  Precious moments were spent watching them as they interacted, finishing each other’s stories and slowly winding down memory lane together arm in arm, heart to heart, sister to sister.

It was tough though I will admit.  Tough to watch, knowing that they may not recognize each other the next time they meet.  Wondering how much longer they will know who I am or remember how many blissful hours they spent over the last few days together.  I watched as I wondered how much longer they will be here, both in mind and body.  Sadly, I thought about them and myself and the loss that is coming.  I lamented in my own mind how much life has changed for them ~ the vibrant women I once knew to now.

Simpler times for sure growing up in a small town in the South.  Watching them banter back and forth, giggling like school girls at times, recalling fun memories and sharing stories.  We kept away from the sad as much as possible as I redirected many a conversation which teetered on the verge of today’s truth.  Light, sweet and joyful was the theme of the conversations as much as possible.  When we began gravitating towards sad truths, I redirected as much as I could with honesty, trying to save their minds from what I know in my heart, they understand ~ that a loved one has passed.

It’s heartbreaking to bear witness to how the mind can completely make and break connections.  One minute, you think they are understanding and the next minute, you realize that they haven’t a clue of what we just talked about and they don’t recognize where they are or who they are seeing (other than me thank goodness).  So far, when I say it’s me, they know me.

What I am grateful for is the hugs, the kisses on the cheek, the love that we share as I watch them begin to descend into the abyss of oblivion.  I want to hold tightly to the memories of my last trip, praying that when I return, there will still be enough there for them to recognize each other and me so that we can share more joy, laughter and love.

But I don’t know quite honestly if my wish can be fulfilled.  So I will be grateful for the memories we shared, for the present moments that we have and for the gratitude that I was able to be there for them both and with them both for as long as I could.

It’s not easy to be a caregiver of family whose brains cease to function as they did.  It’s not easy to witness what is scary for them and for me as reality changes so abruptly.  It’s a big responsibility and I don’t think most of us are prepared for it.  Tears flowed freely as did the occasional giggle when their conversations made me laugh.  I am grateful for those things as well, for life is all about the laughter and the tears, don’t you think?  That and staying present, being grateful and just loving what is right now, this minute.

Shine On!

xo

Afraid of Change?

Your Daily Motivation:
Don’t be afraid of change, be afraid of not changing.

-Joel Heller, a Contagious Optimism co-author  

 

Full moons, blue moons, times they are a’changing.  Do you feel it or is it just me?  I feel like I’m in a cyclone these days.  Perhaps that’s why I’m needing space and I can’t seem to get it.  So instead, I’m like the frog in the blender ~ round and round with no escape hatch open.

I don’t mean to sound down, because I’m really not ~ I”m just trying to weather the storm inside.  I’m trying to figure out what I want.  It’s not that I’m unhappy with my circumstances because I’m fine with all of that ~ but obviously from the health issues I’ve been dealing with, it’s my mind/body/soul which needs some TLC (tender loving care) and I believe that I’ve neglected her for too long.  I’ve put her on the back burner so that I could deal with the impending firestorms, knowing that her needs could wait…like always.

But my body is swelling, with no rational reasons, and when I listen to that tiny voice inside my gut, I know.  She’s saying, Pick ME Pick ME ~ ME FIRST!

And so, I am listening.

I will tell you that I am afraid of change, but I am more afraid of not changing this path that I”m on and that’s why this amazing quote was so great today. If you’re inspired by the above quote, make sure you check out the book below ~ you can find it on Amazon (for some reason, WP wouldn’t let me link it for you, so here’s the picture!

What about you?

Shine On!

xo

Are YOU Brave?

The fearless are merely fearless. People who act in spite of their fear are truly BRAVE. – James A. LaFond-Lewis

Are you brave?  I don’t mean the rushing into the burning building type of brave.  I mean the everyday brave ~ acting in spite of your fear bravery.  The courage it takes to follow your dreams and to take baby steps on the path of the unknown.  Do you have the ability to stretch out of your comfort zone in order to reach for something that you want?  Can you find that Inner Hotshot who wants more in life?

Are YOU brave?

Did you answer yes?

Woo Hoo for you!  Give me some advice ~ what helps you to be brave?  Please, comment below with any suggestions you may have to help us along this journey of life!  I love how people are able to overcome so much in life!  What’s your secret weapon to help you abolish fear?  Have you a sword to banish worry, anxiety or failure?  Or a magic wand to swipe away doubt?

Did you answer no?

Do you want to be brave?  What’s holding you back?  Do you even know?  Why is fear keeping your happiness at bay?  Do you hold the fear and anxiety close to your heart?  Do you want to send fear packing so that you can live your life with courage and without fear?

I don’t have the answers.  I wish I did because you know I’d share them with you.  So I’m looking to you my dear readers…

What’s your secret to bravery?

What’s with your courage?

Please share!

Shine On!

xo

Pink Post ~ Smile

“I’d say that I think the most revolutionary act that you can commit in our society today is to be happy.” ~Hunter Doherty “Patch” Adams

A few weeks ago, I couldn’t sleep and in the middle of the night I came downstairs quietly to see what was on television, hoping that I could fall back to sleep.  Instead, I was blessed with the beginning of the movie Patch Adams.  That sleepless night sparked the blog post TREATING A PERSON.

Today’s post is a bit lighter perhaps as I think it’s important to laugh when we get the chance ~ and laughter is a known healing mechanism of the body!  Laughing increases happiness ~ laughter is a blip of relief from pain, worry, anxiety and that feeling of helplessness that often accompanies illness.  Laughter increases oxygen to the body as it simultaneously exercises our bellies (and who wouldn’t want a flat tummy by laughing ~ oh how I wish it were that easy!)

But I digress ~ this post is for all of the patients out there and for all of those in the field of medicine.  Connecting with others helps to heal them or at least to alleviate their pain with understanding.  Please, the next time you are in either role, remember to look into the eyes of the other person, acknowledge them and perhaps say to them, I SEE  YOU!

Enjoy the trailer below of the movie!

Shine On and SMILE!

xo

This Girl Is Not Afraid!

This Girl is not AFRAID! Psalm 27:1

Are you still with me ~ stretching out of your comfort zone ~ whatever that means for you?  Are you exploring your Inner Hotshot a bit these days?  Have you looked back to see what you used to be like or what you used to do without fear that you don’t do now?  And are you stretching your limits a bit?

For the last few weeks, I’ve been easing out of my comfort zone, one experience after another and the results have been really good!  I wanted to take this opportunity to check in with you before tomorrow to see if you’re still trying!  I know it’s not easy to be uncomfortable, but take it from me, it’s well-worth it!

I’ve been blessed to have my friend SAngel who has been leading the way for me ~ holding out her hand when I’ve been afraid ~ so that when I need support, a gentle push and even a pat on the back, I know she’s there for me.  It’s an amazing journey these days ~ I’m changing my life and watching it blossom the way I have felt inside!  It’s amazing when you have a supportive friend who knows what you are enduring and who stands by you when you’re uncomfortable and then praises you when you’ve accomplished the task!

Fear holds most of us back ~ the fear of looking silly to others, the fear of not succeeding, the fear of failure, sometimes even the fear of success!

I love this wallet sized inspirational card from SendOutCards.  It’s one of my favorite little gifts that I add to cards when I send them to a friend.  For some reason, the whole butterfly metamorphosis and lack of fear depicted on this card makes it just perfect!

So today, please know that I am sending you this card ~ holding out my hand to you ~ take hold ~ You are not afraid anymore!  You have a friend in me!

Shine On!

xo

GOAL!

HIKE!

You know how in football, before the goal, they say HIKE and the play begins?  Well, that’s where I am ~ I love this card because in answering the Daily Prompt’s questions it fits perfectly.  So here are my answers.  Feel free to comment below and answer these questions as well!  I’d love to hear about you too!

When you started this blog, did you set any goals?

To be honest, I set out to just try to blog in the beginning.  I wanted to share what I’d learned from enduring breast cancer as I was a celebrating being a 10 year survivor!  To me, it was an awakening that I was still here even after all I’d endured.  I wanted to write a book, but I felt like what I was writing was riddled with jumps in storytelling.  It didn’t flow properly.

The idea of a blog, a little daily tidbit, appealed to me.  So I simply set out to write often about whatever was pertinent to me that day in hopes that someone out there in this big world would find some type of comfort and connection to it/me.  I wanted to find and forge a community of people who would connect and enjoy life.

Lift each other up, empathize when needed and inspire each other ~

connecting with our strengths and developing our weaknesses.

Have they changed at all?

Certainly they’ve changed.  But the core is still there.  I believe that we are all connected and I love the safe sense of community which bloggers enjoy.  As I wrote above, the blog has developed as time has gone on.  Now with Inner Hotshot University, I’m playing with connecting our strengths and developing our weaknesses by simply taking the commitment to do one thing every week to stretch out of our comfort zones.  I’m not a professional.  I just want to inspire you to continue to learn, to create the life you love living, to appreciate your life and to be grateful.

I started out as Misifusa’s Blog until the name The Presents of Presence came to me and then I changed it.  Eventually I may be expanding…♥♥♥

I am inspired by you all ~ I learn from you ~ and I am so very grateful for your presence in my life!

Share your story!

Shine On!

xo

Daily Prompt: Goals

When you started your blog, did you set any goals? Have you achieved them? Have they changed at all?

http://dailypost.wordpress.com/2013/05/22/daily-prompt-goals/

Pink Post ~ Aloha

Aloha means, “To consciously manifest life joyously in the present.”

I looked up the meaning of Aloha today and it was here  that I found the above meaning.  The meaning suits and is a lovely way to start every morning.  Simply speaking the word “Aloha” seems to roll off the tongue with a special sparkle, don’t you think?  Perhaps it’s because it conjures up thoughts of Hawaii to me even though I’ve not yet been there (but it’s on my bucket list!).   Have you been there yet yourself?  Is it as beautiful as I imagine?  It’s a dream of mine to go ~ one always must have a dream!

I’ve added the Pink Post title as well today, but truthfully I try to write so anyone can relate ~ anyone who has had difficulties in life.  I am a bit scattered this morning, so please forgive me if my musings aren’t organized too well.

I’ve met 2 women recently who’ve been diagnosed with breast cancer and it reminds me of my past.  As each wrestles with the turmoil of uncertainty. fear and the unknown, I feel such empathy for I remember all too well those feelings, those sleepless nights when my mind continued to whirl with the unrest of what if’s and the complete and utter sadness I felt all the way to my soul.

I remember reaching out and being connected to a woman named Nancy who had been diagnosed a year before me.  Occasionally I would call her (there wasn’t texting back in 2002) and with her 6th sense, she would call me sometimes as well ~ always with the most perfect timing.  We didn’t meet for months, but talked on the phone for hours.  She understood what I was enduring and I felt a peace with her as she connected with me, soul to soul, having endured all that I was going through at that time.  She didn’t frighten away when I told her how I felt.  She didn’t shatter when I spoke of my night-time fears and thoughts.  I didn’t sugarcoat how heart-wrenching it felt to be so bereft of my hair, my breasts and what I believed was my femininity.  I didn’t mince my words when I was angry at the cancer which stole so much from me.  I didn’t hold back the tears which many times flowed during the outpouring of emotions.  In turn, Nancy connected with me, empathized, held me spiritually and stayed the touchstone of healing in my life.  She was and still is a blessing in my life.

When I asked how I could ever repay such kindness, she simply asked me to pay it forward.  So with every person I’ve spoken, I remember the priceless feeling of acceptance that Nancy gave me, that feeling of being loved and understood, that knowledge that I didn’t have to comfort her when I needed comforting.  I could take the comfort when needed and when I was strong enough, I could give it as well ~ and that’s been our story for 11 years.  True friendship ~ give and take when needed ~ pure love and understanding.

Do you have a friend like this?  Are you a friend like this?  I am blessed to have many friends whom I can count on and they can count on me.  I have enjoyed the heartfelt connections I’ve made though my blog as well.  Thanks for reading and for being you! ♥

I wish you

ALOHA.

Today and Everyday.

Shine On!

xo

Pink Post ~ Can Worry Change the Outcome?

Worrying will never change the outcome

If you’ve been diagnosed with breast cancer or an illness or have ever waited for an answer that was important to you, then you’ve probably experienced worry in your life.  Be it waiting for test results due to your health or in school or at work ~ be it a job application, your driver’s test, a pregnancy test, a pathology result or anything else, many times worry is our comfortable go-to emotion.

Not that I’m saying that to worry is comfortable.  No way Jose!  Worrying is uncomfortable, but for many of us, it’s the routine emotion that we turn to when we are waiting for the results of something important to us.

Perhaps you are one who worries and thinks about all the possibilities for the outcome of the test.  You can imagine the good, the bad and the ugly result.  You can even go so far as to give yourself the worst result and then plan on how you will deal with that answer, plan how your life will change and how you will live with that change in your life.

Or do you worry, then imagine how relieved you will feel when the result is what you were praying for so that you are healthy?

Or are you the one who just can’t get past the what if’s and can’t even go to to the next step of imagining how life would go on if the result were bad?  Your mind continues to run round and round, thoughts whirring and repeating in your head until you can’t even think straight?

Or do you acknowledge that you are worried about the outcome, but then hands the control over to God/Universe/Life and goes on about the day knowing that no amount of worry gives us any more control over the situation than non-worrying?   Practicing telling the family the dreaded results or the happy ones still doesn’t change the situation at all for the moment.  Without knowing the result, this is all just busy mind conjecture and doesn’t do anything, but drive us into a frenzy at warp speed.

Do you relate with any of the above situations?  Are you a worrier?  Do you know someone who is?

Well, join the club my friends for I’m a worrier too.

I grew up surrounded by worriers.  ‘What if’s’ ruled the roost, cocka-doodle-dooing from morning to dusk growing up.  In fact, it became so ingrained in me that my first instinct if I’m not careful in my thinking goes right back to the ‘what if’s’ and to the worst outcome and how I will live with that result in my life.

I remember my father used to tell me that I needed to check my breasts to make sure that I didn’t get breast cancer.  His own mother had died from it when he was studying for his last exam during his senior year in college.  I don’t remember if he annoyed my sister with those same worries, but I clearly remember feeling pestered by him.  It almost felt constant although it surely wasn’t.  However, it was his constant worry that made me flippantly tell him that if I did get breast cancer, I would simply get my breasts taken off and get new ones.  I’d be the perkiest 80 year old on the beach due to non-saggy implants if that happened.  And off I’d go, on my merry way, feeling smug in having told him and gotten him off of my back, stunned into silence by my bravado.  And more than 14 years later ~ his worry came true and so did my flip answer to him.

…

Now I’m not blaming his perseveration of worrying about me getting breast cancer is what gave it to me, but I am saying that we need to watch our words and what we choose to put our attention to in this life.  My smug retort came true ~ I did end up with breast cancer and with a double mastectomy.   In fact, I have endured 3 separate reconstructions of those perky boobies.  So I ask you, what are the odds that his worry, my response and what happened are all related?

But back to worry ~ it’s easy for me to tell you not to worry ~ and believe me, I’ve counseled many people (not to mention myself!) to not worry about what may happen ~ I’ve even gone so far as to tell them that worrying is like rocking in a rocking chair and expecting to get somewhere ~ you can rock and rock all day long, but you’ll still stay in the same place.

I’ve offered to help people pack up their worries and give them to God/Universe or even to hand them over to me for awhile, knowing that I’d keep the bundle safe for them and that they could have it back whenever they chose (of course, I was going to drop that bundle into God/Universe’s lap as soon as I got my hands on it!)  No way was I burdening myself with their worries!

It’s amazing how people react when I tell them that I’ll take their worries.  They don’t want to give them up ~ they think because they have their pile of worries, they are in control of the situation.  It makes us somehow feel more in control when we hold our own worries, we’re greedy misers who don’t want to Let Go and Let God.  We believe that we hold the key with our worries.  Sometimes, we don’t even realize how stressed and how tightly we are holding on to the ‘what if’s’ and the anxiety which uncertainty brings to our lives.  We just know that if we can be left alone to worry, to agonize and to perseverate on the matter, we can somehow make it come out as we want.  We believe that we have control.

Well, my darlings, guess what I’ve learned?  We don’t have control over everything.

There, I’ve said it.  Whew ~ do you believe me?  Do you think you have special control powers?  Do you believe that you are different?  Because I did too for a long time.  Now I’ve just learned that I need to go with the flow, do my best, be as healthy as I can and just keep on living, loving and breathing.

Sorry for the long post and I apologize to whomever I copied the above image from on Pinterest.  It was so perfect that I just had to use it.

Thanks for reading today ~ I would love to hear how you feel about worry.

If you are a worrier, how are you dealing with worry in your life?

Shine On!

xo

Pink Once A Week

Lately I’ve been just going with the flow in my life, but I’ve been dabbling in writing a book or two as well.  It seems to me when we breast cancer patients finish treatment, we are sent out into the world with less than nothing in order to rebuild our lives.  As an 11 year survivor, I’m finding that there are so many women out there who are asking as I did, “What now?” because quite frankly, it’s a bit overwhelming.

First there’s the simple grieving process of being diagnosed, with the subsequent surgeries ranging from a lumpectomy to a full double mastectomy which is enough to depress the happiest of souls followed by the reconstruction surgeries which may or may not take place at the same time.  Most times we endure chemotherapy which as the meds designed to kill cancer cells, slowly changes our body chemistry as well, we endure hair loss including baldness, depression, nausea, aches, pains, weight gain and hot flashes, none which are sexy or fun.  Afterwards, we may have radiation treatment daily which tires us out and gives us a mean sunburn among other things.

And then, we’re set free ~ off to a world filled with pink ribbons and we are handed a survivor sign to commemorate our cancer journey.

But what about the new normal that we’re trying so desperately to find?  It’s a hard road to get used to implants or being breast-less or multiple surgeries.  It’s a process to accept our new bodies with the restrictions surrounding them.  Self-esteem, self-confidence and self-acceptance need to improve so that we can feel good about ourselves and that’s simply NOT just a breast cancer thing either!

So that’s what I’m writing about ~ I want to give a class on it ~ I want to help women who are looking for a friend  to hold her hand as we travel along this road together.  It’s the beautiful thing about women who’ve endured breast cancer.  None of us have wanted to join this group, but since we are all here, we bond.

You can meet a stranger who has breast cancer and instantly, there’s a bond of knowing and understanding which forms quite literally in moments.  We’ve been there and we understand each other.  Have you found that happens to you?  I think it’s human nature to bond with others of similar circumstances.  I know I’ve bonded with others who’ve been grieving over the loss of a parent since my dad passed away last year.  It’s when we open up and connect with each other that healing can take place.

So if you’re interested, let me know because I’d like to write a bit more about it here on my blog.  But I’m testing the waters first because many of my readers aren’t breast cancer survivors ~ but since we’ve all experienced sadness in our lives (at least most of us), I thought it could help others as well since I like the glass half full approach!

What do you think?  Would you appreciate just once a week breast cancer help? 

Please let me know!  Just click on the Poll below!   Thank you!

Shine On!

xo