Tag Archive | losing my mind

On My Knees

onmyknees

As you’ve seen in my last few posts, life has been hard these days.  For me, writing is my outlet, sharing what I think might help someone else who is a caregiver of someone whom they love who has Alzheimer’s Disease and Dementia.  I write in order to connect with others who are walking this path because we understand how emotional it can be and you just need support from others who get it.

There is no cure for this disease.  It is fatal.  As the mind shuts down, the body begins its journey as well.  It’s genetic as well, which means that those of us with relatives with the disease, can be subject to it in the future.

Think about that for a moment…what you may be witnessing as a child of a parent with Alzheimer’s, may be you one day.  It puts a terrible spin on the whole experience, don’t you think?  For then, with that knowledge, we wonder if we have it and every tidbit of forgetfulness becomes a full blown worry if it’s early onset of the disease.

Just because a parent has the disease, doesn’t necessarily mean that the offspring will develop it though, which is good news.  For it’s hard enough to watch a loved one struggle to hold onto information, recognize people and remember that loved ones have passed away.  The incessant questioning and cycles of repetition can make it hard to be patient, especially when we are hurting as well.  In truth, I’ve cried a boatload of tears lately in frustration and sadness in feeling so helpless.

The power of prayer and faith helps.  When I can’t stop trying to fix the situation or at least better it, I find that getting on my knees to pray helps quiet my mind.  Simply handing it over to God for the night, once I finally let go, let Him in and let God take it from here that is.  I’m a tough cookie.  I like to keep a handle on things so it’s harder for me to allow the Universe and God to hold onto everything while I sleep. But it helps so much.

Do you ever find yourself on your knees praying when all else fails?

Shine On!

xo

 

 

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I’ll Be Me

glencampbellGlen Campbell ~ I’ll Be Me

Recently I watched the I’ll Be Me documentary which chronicled Glen Campbell and his family’s last music tour during 2012 after he was diagnosed with Alzheimer’s Disease.  Having family members with the disease, it really hit home.  I found myself so moved by the documentary which tastefully showed the progression of the disease.  Tears fell from my eyes at times when I felt for him, for his wife, for his children because I understood and connected with their situation.  It wasn’t easy, but I am grateful I was alone to watch and grateful for their/his courage in making the documentary. With memory-loss, there’s a bereft feeling left for those who love you ~  for it is our memories of the vitality, the energy and the YOU that we remember that is now slowly fading right in front of us.  Sure, there are moments of clarity which we hang onto and then there are moments of confusion which frustrate you and us.  I never knew so much about the disease until it hit our home.  It rearranged dynamics and has been a test in patience.  For the person we knew for a lifetime is still the same, but the relationship changes and they change as well.  We stand by helplessly as the disease progresses.  It’s a test of learning to go with the flow, to be fluid throughout the day, always keeping in mind how to help our loved ones stay peaceful.  I think there’s a special place in Heaven for those who work in memory care. So in honor of all those affected by the disease and a huge hug for the caretakers who hope, understand and love those with memory problems, Glen’s video is below.  His haunting words make me cry every time.  But it’s a good cry, a tethered connection of understanding and a legacy to all those affected by this disease.

Shine On!

xo

Lyrics:

I’m still here, but yet I’m gone

I don’t play guitar or sing my songs

They never defined who I am

The man that loves you ’til the end

You’re the last person I will love

You’re the last face I will recall

And best of all, I’m not gonna miss you

Not gonna miss you

I’m never gonna hold you like I did

Or say I love you to the kids

You’re never gonna see it in my eyes

It’s not gonna hurt me when you cry

I’m never gonna know what you go through

All the things I say or do

All the hurt and all the pain

One thing selfishly remains

I’m not gonna miss you

I’m not gonna miss you

Songwriters RAYMOND, JULIAN / CAMPBELL, GLEN

Hold Onto the Rainbow

holdontotherainbowHold Onto the Rainbow

Being a caregiver for loved ones with Alzheimer’s and Dementia, it’s a daily struggle for them and for us as caregivers.  Some days are harder than others.  Some moments are stormy and then when the sun breaks through with a glorious rainbow, we are rewarded with a real time reality moment of lucidity with a loved one ~ whether it be a shared trip down memory lane or a moment of recognition, a shared laugh, even a hug with the knowledge that we both know who we are.  For me, it’s the rainbow throughout the storms that their minds are enduring.

I feel compassion as I take time to observe how they live in the world of their minds.  It’s frightening when your mind doesn’t work as it used to and it’s beleaguering the point when I say it over and over that I can’t imagine how hard it must be.  We go with the flow here.  Allowing whatever comes to her mind to flow and I try to ride the wave even when the tsunami hits us.  Dogged determination takes over common sense and many times it’s wasted breath to explain.  Changing the channel, getting up to do something else or pausing to change the focus does help sometimes, but at others, it changes nothing and she perseverates all the harder on the thought at hand.

What I live for are the stolen moments of rainbows through the storm:  the laughter which releases anxiety, the connection when I’ve surprised her with a visit from an old friend of hers, the banter which we share when we travel down memory lane.

The storms pass, but get longer as the days do.  Riding this roller coaster of brain firings and misfirings is hard for us both as we travel down the end of the journey.  She longs to crawl back into my womb at times and it saddens me.  She is not my child by birth, yet she’s now my child.  If I were able to carry her, protect her and keep her with me safe and secure, I would try, but it’s not an option.  To release her as she wishes at times would be beneficial I believe, even though it saddens me a great deal.

I long for the carefree days of youth and vitality which are no longer.  I long to be held and protected myself, but I only have my own arms to do that for me.  So I take moments of peace whenever I can, to hold and to hug myself so that I can continue to have strength to do it for her as well.

It’s hard to watch a loved one’s mind deteriorate while they sometimes understand what is happening to them.  All I can do is be there for her which I am doing, heart, mind, soul and physically, seeing to her needs and allowing my own a back seat while we carry onwards to a destination which makes no sense to either of us.

Thanks for reading my blog today.  I just needed to write, to mourn, to have a quiet moment to center myself again so that when she awakens, I can be fresh as a daisy, upbeat and filled with loving kindness and empathy in order to find the rainbows whenever I can through the storms.

Shine On!

xo