It Takes Courage to Be A Caregiver

To love a person is to learn the song that is in their heart,

and sing it to them when they have forgotten.*

The movie Still Alice haunts me to my core and yet every time I watch it, I glean more insight and my heart breaks open a bit more.  And still, I continue to watch it when I am alone.  Why, you may ask?  Why would you make yourself sad intentionally?  Isn’t it hard enough to experience your family enduring the road that Alzheimer’s Disease and Dementia have put us on?  And the answer is yes.

But, I search for answers.  I find power within when I allow myself to feel each character’s pain.  It may sound funny to you, but I can relate to Alice, to her husband, to her daughters, all in different times in my life, and at times, simultaneously.  My compassion for the characters and for my family members increases every time I watch the movie.

I am compassionate and I love deeply.  This is who I am.  I need to understand how to best serve my family and how to best serve myself.  I have an ache in my core which carries my courage to push me to accept the unacceptable and to hold that precious gift of time, of making memories that may never stay and of holding the hands and hearts with those who at some point, may never remember who I am nor who they are.  It’s like I hold a flickering candle which I desperately protect in my soul.  I hold my candle in the darkness, like a beacon, hoping for that twinge of awareness, even if it is only for a moment.  I will feel like I did my best.  For I can’t give up on them or on myself.

I grieve in the quiet moments of solitude for them and for myself.  I call daily, visit monthly and spend hours making sure all their needs are met.  I do it with love and compassion and courage for it’s hard.  But it’s necessary and I make myself do those things that are necessary even when I want to turn away from the truth.

I learned long ago from cancer, that our lives are constantly changing and that we need to find a new normal with each and every experience.  We either choose to grow with the experience or we choose to stagnate.  We can turn our backs on the experience or we can move out of our comfort zones to find the courage to accept what we deem unacceptable and take baby steps towards a new normal.

I choose courage.  To look at my life with gratitude.  To be grateful for the opportunity to help my family.  To be kinder to myself, more patient and more present.  To sing the song in my heart and to have the courage to shine my heartlight even in the darkest night.  Come join me…take my hand and let’s sing and…

Shine On!

xo

*Photo credit:  FB Alzheimer’s Awareness

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

 

You Won’t Believe This Woman’s Heartache…Donations Requested

You won’t believe this woman’s heartache.

Reblogged from Richard Paul Evans Please feel free to share!

Today’s blog is a little different. It comes with an invitation to change the story.

I don’t know why some people have to face as much pain as they do. Wilda Thompson is one of those people–a woman whose suffering seems unimaginable.

Wilda’s pain started early in life when her kid brother died in a plane crash. It was a foreshadowing of what was to come. In her early forties, Wilda’s husband died of brain cancer, leaving her a widow with six children to raise by herself. The loss of a spouse is always difficult, but this was only the beginning of Wilda’s afflictions. The cancer Wilda’s husband died from came from a genetic mutation called LFS. Those with the gene have a nearly 90% chance of dying from cancer. Sadly, five of Wilda’s six children inherited the gene. Since her husband’s passing, Wilda has lost four of her six children and a fifth is currently fighting cancer.

To lose a child is one of the most difficult things a parent can suffer. The pain of losing more than one is nearly incomprehensible. But, unbelievably, for Wilda, it gets worse. If you are a grandparent, you will keenly understand this. Ten of Wilda’s fourteen grandchildren inherited the gene. Five of them have already died of cancer.

Particularly heartbreaking is that not all of Wilda’s deceased loved ones have died from the gene. One of her grandchildren, a five-year-old granddaughter, made national news in 1998 when she was found dead with four other little girls who had accidentally locked themselves in the trunk of a car. Another one of Wilda’s children and grandchildren drowned when a sudden storm hit the lake they were fishing on. For three days Wilda sat on the shore while the police dragged the lake for her son’s and grandson’s bodies. I don’t know how she has survived this.

As I learned of Wilda’s suffering a friend of mine came up with an idea that will not only help Wilda, but will help thousands of children as well. An experiment in communal charity.

There was a time not so long ago that when someone’s barn burned down, the community came together to rebuild it. This is the beauty and power of community. Those days may be gone, but I believe people still have that heart. One of Wilda’s children’s last words were, “Please find a home for mom.” Ever since Wilda became a widow, she has lived, with her children, in whatever housing she could afford, bouncing from apartment to apartment. Wilda is no slacker. She has worked tirelessly to provide for her family her whole life. (Except for the times that she’s had to care for a dying child.)  Raising a family as a single mother is always difficult, but add massive medical bills to the equation, and, well,  you get the picture.

This is how we can help. A generous, anonymous donor has put money down on an inexpensive condo we would like to purchase for Wilda to live in for the rest of her life. (She’s currently 72) Upon her death, the condo will be sold and the proceeds will go to pay off the Christmas Box House, a home for abused children. Since its inception the Christmas Box House has housed and aided more than 75,000 abused children. If everyone who reads this blog makes a small donation, just $2, we can not only help a widow now, but we will help abused children for decades to come. (Of course you can donate more.)

The Bible tells us that pure religion is to comfort the widow and the fatherless. This is precisely what I am inviting you to join us in doing. To not only make a small donation, but to share this link with others. If you can’t afford a donation, and some can’t, then please share this link. That too is a donation. We can’t bring Wilda’s loved ones back. We can’t even save her grandchildrens’ lives. But we can make a difference in her life–and then the lives of thousands of abused children to come.

I have looked intensely into this story and know it to be true. (Recently the Deseret News, ran a two-part story on Wilda. The above photograph is courtesy of Deseret News.) I know there are many in our world who need help. And maybe our community can’t help everyone, but that’s no excuse not to help someone. Thank you for your consideration. Thank you for sharing. To make a donation just click here. Or mail a check to the Wilda Thompson Charitable Account, America First Credit Union, P.O. Box 9199, Ogden, Utah, 84409-0199. 100% will go to pay for the home. If there is any extra money raised, it will go to help abused and neglected children. Blessings. And thank you for helping. I will keep you updated on our progress.

Want more information?  Here’s the whole story…A-beleaguered-family-2-12-in-4-generations-diagnosed-with-cancer-so-far.

Photographer: Jeffrey D. Allred. Courtesy Deseret News.

Richard Paul Evans is the #1 New York Times and USA Today bestselling author of The Christmas Box and the Michael Vey series. He is the author of more than 25 bestselling books. 

Shine On!

xo

 

 

http://www.richardpaulevans.com/wont-believe-womans-heartache/

The Gift of Death

 

I am moved beyond words.  I’ve had to let the experience settle into my bones and stay awhile.  I can’t remember the last time I was so changed by someone.  Words fail me and yet I yearn to speak, to share and to mesh with you.  But I don’t know if you are up for the experience.  I am changed.  I cannot go back and unlearn what has entered and tethered my soul, my brain and my very cells.  It is as if my heart, my soul have cracked wide open.  With the raindrops trickling outside, I hear the peace within my soul beckon to me.  Peace which has long-since been avoiding me, now settles into my solar plexus.  A wide open space of lovingness, of deep breaths which seem to be a necessity as I write to you.

Reacting so strongly to something so simple yet complex is nothing new for me, except that what I experience now is beyond my words.  I am grasping for what to say to you, for how to inexplicably explain what I’m feeling so that you understand.  I ache to reach out to hold your hand and to simply be with this new-found understanding.

I was given a gift by Heather and it is to her whom I give my gratitude.  An innocuous text came to my phone, a recommendation for an amazing film that I should watch.  So I did.

Below is the trailer for the film. 

Let me know what you think.

Shine On!

xo