Like most people, Ted and I have been exposed to the music from the newest Disney animated film, Frozen. The music is pretty catchy and we have been playing it quite a bit. Ted bought the newly released dvd the other day and we thought we’d wait to watch it until this past Sunday when Amanda spends the day at our house.

We’d been playing the music and talking about the movie to Amanda for a couple of weeks and she never acted interested. We got eye rolls from her when we talked about viewing the movie. Our excitement about finally seeing it was met with her negative and disinterested response.

We watched the movie yesterday and, as I expected, she LOVED it.

Now allow me to veer this story to another direction before I tie it all together 🙂

We’ve had some issues with Amanda lately with the primary concern being that she has been taking off her A-VAP at night. Long story short is that an A-VAP is kind of like a C-PAP that all you snorers and sleep apnea people out there wear at night. If Amanda does not wear her A-VAP she can get very ill with breathing problems and pneumonia. Lately, she has been taking it off shortly after going to bed and the eventual results will be hazardous to her health.   The issue has resulted in Ted and me searching for a better place for her to live. She needs a place where there is 24-hour staffing so that the staff can check on her during the night and help her put her A-VAP back on.

We have been talking to Amanda about moving her to a group home or even another apartment where she would have one or two roommates. We feel Amanda would benefit from the safety of 24-hour staffing as well as the stimulation of having more people around her. (If you know Amanda at all then you KNOW she is a people person.)

This morning at 6am she called Ted on the house phone and made me get on the extension. She wanted to inform us that if we so much as tried to move her to another place that she would stop making her evening phone calls to me – communication would be cut off!

She threatened us.

Welcome to the thankless yet necessary world of the caregiver.

Whether it is a parent looking after a special needs adult child or an adult who is tending to their aging parents, we have to make decisions that our loved one is not going to like. It’s so hard. I asked my friend, Elaine Pereira author of the book, I Will Never Forget, about her experience with her mother and whether she ever got threats. Elaine’s journey with her mother down the road of dementia and Alzheimer’s is the topic of her book. Here’s what she said: “My mother finished that sentence [of making threats] and several like it often after her move from Kalamazoo to the assisted living place near me. To some threats (“I’m going to call and tell them to come get me”) I would reply with “You can do that Mom”. To the more sinister one to the receptionist: “If you don’t call my daughter, I’m going to slit me throat!” we immediately scheduled a psychiatric consult which was very helpful. Pretty much anything in between hopefully can be diffused, redirected, moderated, etc.” ***

So my dear Amanda, I know you love your apartment, but because we love and care for you so very much, we have to do what’s best for you and find a better place for you to live. We know change is hard for you, but you will stay healthier in a place with 24-hour staffing and will certainly enjoy the extra living companions.  But we were right about the movie – we knew you’d love it. And I think you will find that we are right about moving you.

Oh she was angry on the phone with us this morning. Later in the morning, she texted me: “DO YOU WANT TO BUILD A SNOWMAN? : )” My interpretation: I (Amanda) am no longer mad at you and I want to tease and joke a little and of course you were right that I loved the movie yesterday. (For those of you with no clue about the movie Frozen, view this: http://www.youtube.com/watch?v=g58-qQUyY4A ) She told me later that she couldn’t get the song out of her head.

Amanda’s threat of cutting off communications in the evening with me did not scare me into changing our plans for a new home for her. In Elaine’s words, the threat has been diffused for now.

It’s still not easy – being a caregiver – and having to make (and force) some decisions.

This small storm has passed.

I guess I shall just …

Let it go.

(Oh – you Frozen watchers knew that was coming! And for those of you who need more frozen info:
http://www.youtube.com/watch?v=moSFlvxnbgk )

Just Laurel

***Find Elaine Pereira’s book, I Will Never Forget at Amazon.com.

(Posted with apologies up front:  The burden of caregiving ruled this morning and I had to write it down while the emotions were fresh.  Perhaps the raw explanation can help give clarity to those who wish to understand.)

Extreme caregiving.

If you have not experienced it, you might be curious to know what it is like.  Especially if you know someone who is a caregiver, you probably don’t understand what your friend or family member is going through.  You can only imagine.  And if you are a caregiver, perhaps this description will hit home with you.  The feelings are fresh this morning so I shall try to put them into words for you.

When I refer to ‘extreme’ caregiving, I am talking about being a caregiver to someone for more than twenty years.  That is not to make small the care that is needed for an elderly loved one.  Usually, as care is given to an elderly person whose health is declining, well, you have the increased age that accelerates the decline of health and most likely your ill and aging seventy year old soul is not going to make it twenty more years.  Of course, the care that is given is exhaustive while at the same time both mentally and physically taxing.  But you wouldn’t change it for the world and there is peace and acceptance in knowing that care was given respectfully to an aging loved one as they wound down to the final years and days of their lives.

The Centers for Disease Control and Prevention (CDC) reported in their 2011 publication, “Summary Health Statistics for U.S. Adults: National Health Interview Survey” that the number of non-institutionalized adults eighteen and older with any physical functional difficulty was 37.4 million.  That figure doesn’t even take into account any accompanying mental disability.  All I can say is there are a lot of parents out there taking care of special needs adult children.  Many of them grow up to be independent adults with jobs and homes where they can function and thrive independently.  But advances in medical technology coupled with the lack of funding and services available for special needs adults has left a lot of parents with the responsibility of giving constant care to a dependent adult child.

The task of taking care of adult special needs children is of course done out of love and with a parents’ devotion.  They are our child.  We will see that they are safe, happy, and well taken care of.  But whereas most children are loved and nurtured with the expectation that they will grow up and out of the house to be independent adults, our special needs children don’t quite make the ‘independent’ part of the move.  After more than twenty years, the proverbial apron strings are not cut and probably never will be.  As a parent, you never feel like the nest is empty.  Even when the adult child is living in a different location, be it a group home or in assisted living, the burden of responsibility still weighs heavy.  The special needs adult child still calls several times a day, they still get ill and need moms’ help, they need this or that, want this or that, and because there is often a mental deficiency, as a parent you can’t explain to your child that they are being too dependent and needy.  They just don’t understand.  They live with an autonomous way of thinking:  I have a need and I will call my mom to have it fulfilled.

Perhaps this will give you an understanding of the way life feels, as this is the scenario I sometimes feel like I am in:

When life gets challenging, people will say that they could barely ‘keep their head above the water’.  Many days I feel like I am treading water in a whirlpool called ‘life’.  I have lots of things to do each day and as I complete each task, I do it while keeping afloat and with my head above the water.  You have to keep breathing, right?  But with a handicapped child, you feel like you are treading water while holding onto him or her.  When a parent is young, healthy, and full of energy, the burden is light.  I can tread water with one hand and hold onto my child at the same time!  At times the water gets rough and the whirlpool spins fast and turbulent.  It’s okay, I am strong as I push my child’s head above the water line.  Sometimes there are buoys called friends or family who offer to swim with your child so that you can swim easily for a while and regain your strength.  But as the years go by, fatigue grows and the muscles are weakened.  Even when there is a buoy or a life ring to help hold my child up at times, my child is still tethered to my heart.   I am always watching, wondering, and worrying about where they are, if they are okay, and scared that some health crisis is looming, like a shark in the water.  When the waters of life get stormy and there are health concerns or other needs, it can be dizzying as the journey gets turbulent.  You feel like life is spinning out of control.  You can barely swim by yourself and yet you have the loving burden of keeping your child’s head above water.  Many times you are so busy keeping them afloat that you, yourself, are drowning.  You are tired but you can’t let go.  You want so badly to be able to release your child and watch them swim.  You are scared to death because you know if you let go, they will drown.  You can’t force your child to suddenly learn to swim, so you must keep them afloat.  You are finding it harder to swim.  You pray for still waters.  You fear the change in weather that will stir things up.  Life keeps moving and spinning and you keep treading water.  There is no end in sight.  You want to get out of the water so badly, but there is no way out.  Life keeps moving on.  There are days I feel so tired and water-logged and my view is the continual swirling dark waters that I try to will and pray into calm submission.

Oh there are periods of calm blue water and sunshine.  Those are days of easy swimming.   My grasp on my child is not so clutched and we can almost float along.  Those days are relished.  Those days are appreciated.  But my eye is always on the horizon as I hope to recognize if bad weather is approaching.  But when the waters have seemed rough for too long, fatigue rules and muscles turn to jelly.

I’ve been treading water for over thirty years.  I’m sorry but I’m tired.

But I’ll keep swimming.

Psalm 23:1-3 The Lord is my shepherd, I lack nothing.  He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul.  He guides me along the right paths for his name’s sake.

Just Laurel

ps Please pass this on to any caregivers you know.  And please reply if this helped you understand how a caregiver feels or if you are a caregiver – did I touch home with you?

I can’t stop thinking about my Hungarian friend that I wrote about yesterday.

All the lonely people.  (Beatles, 1966)

I spent a little time with Amanda this afternoon.  I try to do it whenever I get a chance.  Actually she let me know this morning that she really wanted to go to a favorite local store.  “Why?” I asked.  “Because I haven’t been in a while and I would like to look around,” she answered.

So I took her.

We bought her a big bag of Cheetohs for her to snack on and a pink plastic pencil sharpener.  She was going to color with colored pencils tonight and many of them needed sharpening.

After shopping I hung out with her for a while.  As I helped her work on a puzzle with a picture of a gray kitten and purple flowers, I asked her what I should blog about today.  “Me,” she answered simply.   “Umm … okay … what do you want me to say?” I asked.  “Say how I’m still enjoying my apartment … umm … how I’m doing great…” she responded with some thought.  “Anything else?”  I asked.  “No, that’s all,” she finished.

So … Amanda is still enjoying her apartment, everyone, and she seems to be happy.

But …

Most every afternoon she is alone from noon to 5pm.  She gets bored.  And lonely.  So that is why I try to stop over.

I bet my Hungarian friend gets lonely.  Patients at the surgical center where I work are instructed to have someone accompany them on the day of their surgery so that they can drive the patient home afterwards when residual anesthetic makes it unsafe for the patient to drive.  Most patients have a spouse, family member, or friend to accompany them.  Apparently, my Hungarian friend did not have any one to drive her.  Fortunately, our center provides transportation for patients when they need it.  I wonder if anyone ever visits her.

Psalm 25:15-17 My eyes are ever on the Lord, for only He will release my feet from the snare.  Turn to me and be gracious to me, for I am lonely and afflicted.  Relieve the troubles of my heart and free me from my anguish.

I know we are all busy doing our own thing.  Sometimes it is not in our plan to spend time with other people who just want someone to talk to.  But, please remember the lonely people out there.

All the lonely people.

just Laurel

No stories today.  No thoughtful insights.  Oh – I’ve got plenty of them!  Haha!  I just thought I’d just give some updates.

Yes – Amanda is moving out.  You will notice a new count down.  Please be patient with me.  Unless you’ve done it – you can’t imagine the decisions and the struggles to finally move your special needs, twenty-nine year old out.  More details later – I promise!

My book:  Amanda, Perfectly Made is available in soft cover, hard cover, and kindle on Amazon and Barnes and Noble websites as well as with my publisher, iUniverse.  Thank you to those who have bought and read it already!

If you don’t already know – here are ways you can reach me:

lrg1959@aol.com  (my email)

www.justlaurel.wordpress.com  (I know – you are here already – just had to type the address for you!)

www.amandaperfectlymade.com  (website for the book)

and on facebook, my personal page is under Laurel Greshel and my other page is under my author name Laurel Rausch Greshel.

I need feedback from YOU ….

What do you want me to blog about?  And – please – send me some “Ask the author questions” – for a future blog!

Please pass the word about the book – a good read for moms, nurses, doctors, teachers. any person who knows a special needs person, caregivers of all kinds, and anyone who enjoys inspirational stories.

Book signings – I have 2 scheduled.  I would be happy to speak to a group – of moms, of church groups, whatev.  And sign books, too.  Ask me!

YES – there will be a second book.  I have several in my head – so there will be future titles coming.

If you know any one with connections to radio stations, newspapers, or tv shows (I want to get on the View and Fox News  –  haha!)  hook me up.

If you have read the book – please post a review on Amazon or Barnes and Noble.

THANK YOU for reading … some of you I know, and some are strangers so me.  I appreciate you and am humbled by your attention to my blog and to this book.

just Laurel