Just Laurel

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just pray

April 26, 2014 Leave a Comment

My daughter Jillian attends Ross School of Veterinary Medicine which is located on St. Kitts Island way down in the Caribbean.  It was so hard justpraysending her off to such a foreign land.  As her parents, Ted and I worried about her safety, health, and well-being in such a faraway place.  It made it much easier knowing that she had her husband with her.  We trusted Andy to keep both of them safe.  He offered all the physical and emotional support that has, so far, gotten her through four of seven semesters.

This next semester it all changes.  Andy will be staying in the states to start work on his doctorate.  Jillian will return (following her semester break home here in Michigan) to school by herself.  We are all a little nervous about it.  One issue that came up was that of cell phones for communication.  Jill and Andy have cell phones on the island – and those phones really are for use only on the island.  Jill had a phone that she used in the states – when she was in the states.  As Jill was trying to explain to me the different kinds of phones and service plans while trying to figure out who needed what kind of phone, she made this comment to me that summarized the goal she was trying to achieve:

“I just want to have Andy in my pocket.”

That hit me like a rush of wind and caused my heart to sigh and my eyes to tear.  She has depended on him for the past sixteen months and he has always been there to help.  Now she will be flying solo so to speak and wants a direct line to him.

It made me think 🙂

We all have available to us the very best source of help we could ever need – and it is in our pockets.  When things are going wrong and we need to cry out for help – simply take your hands out of your pockets, put them together, and pray.

I want to help Jill as much as I can while she is far away at school.  I am frustrated that I cannot call anytime I want (she is in class or it costs too much), I cannot send frequent care packages (you can’t believe how expensive it is to mail a package to an island in the Caribbean), and I can’t drive over there for a quick day or weekend visit to take her out to eat or spoil her with a shopping trip.  All I can do is pray.

I know there are a lot of moms out there with adult children who are living far away, attending school in another state, or who are not just physically distant, but have distanced themselves emotionally leaving a huge relationship gap.  Don’t forget that you have the most powerful method of assistance available at your fingertips and in your very own pockets.  Your hands.  Just pray.

Jilly, you can do it!  Andy loves you.  There are lots of friends and family who love you.  And God loves you.  Trust Him.

I’ll be here praying for you.

Just Laurel
(just mom)

Deuteronomy 31:6 Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”

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My Easter lesson from Lucy

April 20, 2014 1 Comment

On Palm Sunday our church presented a drama and musical presentation where we transformed the front of the church in to the city of Jerusalem.  With actors and singing, our audience got to see Jesus healing the crippled, changing lives, and making His triumphant entry into the city while people waved palm branches.  It was in this Palm Sunday presentation that I portrayed the adulteress woman who was to be stoned – and was spared by Jesus who asked the crowd, “Let any one of you who is without sin be the first to throw a stone at her.”  The woman is not stoned – and in our presentation – she sings a song of being forgiven and how “to sin is surely human but forgiveness – is divine.”

On Maundy Thursday, our drama presentation continued with a crowd of people finding Jesus in the garden where Judas kisses and betrays Jesus.  Our small crowd of actors and actresses were having a little trouble getting into character and rabble-rousing so I offered to put on my bland townspeople costume from the weekend before and help them.  As Jesus was arrested following Judas’ kiss, we had to shout in anger, “Crucify Him!  Crucify Him!”

What happened after that church service still leaves me in breathless fascination.

I had changed out of my costume and back into ‘normal’ clothes and was talking in the gathering space with an old friend.  Circling around me was a young eight year old girl in our congregation named Lucy.  We knew each other, although she never really speaks to me individually.  She may be with her parents while I speak to them, but more likely she is darting in and out of other people, chasing her siblings.  This time she was right up next to me, actually brushing against my clothes, and was trying to patiently wait for my break in conversation to obviously speak to me.  I was curious and so I stopped my conversation with my friend and looked down at Lucy and asked her, “Do you have something to say to me Lucy?”  She stopped and looked up at me.  “Why did you yell ‘crucify Him’ to Jesus today when last week you were so happy he forgave you?”

I was stunned.

I was speechless.

Out of the mouths of babes.

I put a hand on each of Lucy’s cheeks and looked her straight in the eye and replied, “Lucy you are the only one who noticed.”

She watched me on Palm Sunday and heard my grateful praise to Jesus.  And then she recognized me in my same costume shouting in anger Heisrisenwith the demands that Jesus be crucified.

Sadly, isn’t that what we all do?  Especially at Easter when we all attend church and sing joyfully that “Jesus Christ is risen today – hallelujah!”  And then tomorrow we curse him when our car won’t start, our spouse angers us, or life throws a challenge at us.  Why are we so quick to praise God, then blame him for what we don’t like?

Thank you, Lucy, for your Easter message to me.  I had to share it.  It is such a simple lesson but one that is so very great.  If we claim Jesus as our Lord and Savior, then we’d best live our lives like we mean it every day.  It’s not just a Sunday habit, is it?  And tomorrow when we are at work or somewhere at play, we must continue to walk hand in hand with Jesus.  To deny Him is like shouting “crucify Him”.

Christ is risen!  He is risen indeed!  Hallelujah!

Just Laurel

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a positive perspective

April 14, 2014 Leave a Comment

positiveperspective

I’m afraid I’ve been a bit on the negative side lately with the challenges we are facing in potentially moving Amanda, and the dealings with agencies and caseworkers. Thanks for letting me air my frustrations! I would like today’s note to be a positive one. Aren’t most ‘comments’ and ‘reviews’ negative and full of complaints and all the things gone wrong? I have been reminded to include the positive things too.

The following was posted by Anna – I saw it on Facebook and asked her if I could repost it and she said “yes”. Anna takes care of a special needs young adult, but is also a part time worker for my very own Amanda.

 

“It’s pretty great to make such a positive impact on a person’s life. Helping people with disabilities has opened my eyes more to seeing people dealing with the trials in their life, rather than just seeing the disability itself. Being able to be a part of their life, actually see life through their eyes, understanding the pain that they feel. These people have had more surgeries, more judgment, more awkward stares, and more emotion than most can imagine. To be completely dependent on others, having their privacy completely invaded in every imaginable instance, and still having the love and trust in others is something I can never fully comprehend. I’m honored to be able to be a part of these people’s lives. And to think, when I started this job I thought I would be helping them, but instead of me being a positive influence on them, they have been an even bigger one on me.”

 

Thank you Anna.

Just Laurel

1 Thessalonians 5:11 Therefore encourage one another and build one another up, just as you are doing.

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CAREGIVER ***ALERT***

April 9, 2014 7 Comments

CAREGIVER ALERT !!!

Attention all caregivers out there. Whether you take care of a special needs child or elderly parent, you better make sure you know what you are doing. If you don’t, someone is going to tattle on you and they will want to take over for you. After all, they know MORE than you do and they know what’s BEST for your loved one. (Insert sarcasm here.)

If you are a caregiver for a loved one, then you know how emotionally exhausting it can be to be sure your special person is SAFE and HAPPY. We bend over backwards, experience sleepless worry-filled nights, take time away from jobs, friends, and family, and go out of our way to contact people and services to provide the best life we can for the person we are caregiver for.

If you have read my book, Amanda, Perfectly Made, then you are aware of the thirty year journey I’ve had being mom to Amanda. From my heart, I have always done the best I could for my daughters – and I say daughters in the plural form because I have three of them. I want them all to grow up and live a happy life and a safe life. Amanda is physically challenged. I’ve had to help her more than my other two daughters. Amanda needs help with making life decisions yet we have always made her a part of that decision making process.  In my book you will read about how we have had some pretty unbelievable situations with doctors, professionals, wheelchair companies, teachers, and all sorts of people throughout Amanda’s life who thought they were smarter and were not listening to us, the parents, about what was best for Amanda.

Today this whole issue came to a head and I am livid and shaking with anger. For those of you who don’t know – Amanda sleeps with an AVAP machine. It is like a BiPAP that people who snore or have sleep apnea use at night. The AVAP is different in that it is almost like a respirator and literally blows periodic breaths – because Amanda has neurological deficits so that when she is fast asleep, her body forgets to breathe. The AVAP forces the breaths through the night. If Amanda does not her AVAP mask at night, she could stop breathing. Lately, Amanda has been taking her mask off almost every night. She cannot tell us why she takes it off. We have to assume she is doing it in her sleep. Amanda has also been in her own apartment for the past year with nine hours of staffing a day to help her. She is alone at night. Ted and I have decided that it is critical now that we get her twenty-four hour staffing. She needs people to check on her throughout the night who can put her mask back on her face. We are forced to move her from her apartment to a place of twenty-four hour care or else she is not going to wake up some morning. Then there’s the issue of our concern that our very social and friendly little Amanda loves being around people (which is quite limited in her apartment – all by herself) – and a group home would give her so much more in the way of having people around all the time to talk and interact with, with the bonus of having the security of night staff.

Am I wrong? Am I stupid? Doesn’t it sound to you that Amanda needs twenty-four hour staffing? Is it bad to want her around more people? Safe and Happy. That’s what we want. Amanda is happy around people. Wearing her mask all night is a medical safety necessity.

So…

Amanda has a caseworker who helps coordinate any care she needs. When I sat down with her the other week and voiced my concern about Amanda needing to be in a group home (for the reasons described above) she replied only with negative comments on group homes. Part of the problem was probably the fact that to get Amanda into the group home I was looking at would mean getting a new caseworker with another agency. I told the current caseworker I needed to switch. That was the same meeting I talked about in my blog at www.justlaurel.com where I left the room and the caseworker almost got Amanda to sign a paper to make her her own guardian. Oh jeez.

So there is another agency that we work with that provides the staffing Amanda gets each day. And here is where things explode.

I explained to the staffing agency about how we needed night staff for Amanda but that it was only temporary until we moved her to a group home. Everything went well with our discussion. At the end, the woman on the line said to me, “By the way, I was meaning to call you any ways because Amanda’s caseworker called here last week and was concerned about Amanda and the potentially bad decisions her parents were making for her.”

WHAT?

The women on the phone explained that it was quite out of line, maybe even a big legal no-no that she would make such a phone call. She told the caseworker that she needed to speak to Amanda’s parents and not to the staffing agency.

The caseworker was tattling on us. WE ARE SO MEAN AND MAKING HORRIBLE DECISIONS ABOUT AMANDA’S LIFE. Really???

I am totally appalled. I am absolutely INSULTED. How dare she take her college book knowledge and slap me in the face with thinking that she knew best what Amanda needed!!! WHAT ABOUT THE THIRTY YEAR HANDS-ON EDUCATION I’VE HAD WITH AMANDA?  I am so angry – I feel like bursting into that case workers office and flinging one of me books at her and screaming “You read THIS and THEN you come talk to me about what’s best for Amanda!”  But then she’d probably report that I was violent or hysterical and take Amanda away from me, the crazy mother.  So, I will not confront her nor lower myself to her in any way.  (But I am waiting for her to TRY and make another move.)

If you are current with the news, you may be following the story of the Pelletier family in Boston who had their daughter taken away from them. She is sick and the hospital believes that the daughter really has a psychological disorder and her illness is all in her head. The girl has actually been diagnosed with a mitochondrial disease and treated at another hospital. Doesn’t matter though, I guess. The parents were served with papers that accused them of medical abuse! The parents lost custody and now have no say in her care.

What is this world coming to???

govtbestAm I going to lose custody of Amanda?  Will this caseworker pursue her ‘rescue’ attempt at getting Amanda away from her controlling parents so that Amanda can be happy happy happy?  This caseworker is absolutely clueless.

So caregivers – watch out. Your local county friendly caseworker may be watching your every move. They know what is best for your loved one AND YOU DO NOT. It doesn’t matter how many years you’ve spent with this person, tears you’ve shed over trying to make their lives full, the sleepless nights you’ve endured, or the sacrifices you’ve made to keep your loved one safe and happy. Government knows best.

I am just appalled.

Just Laurel

7 Comments Filed Under: Just Laurel Thinking, Moving Amanda Out

listen

April 5, 2014 Leave a Comment

I am a listener.  I am not the gabby one.  I can hear SO MUCH when I stay silent and focus on listening.

We have two ears and only one tongue in order that we may hear more and speak less.

I shall retell a story from an earlier blog about an acquaintance I had at church.  One day as I was going up the staircase, she was going down.  The conversation went kind of like this:  “Hi Laurel, how are you??  Blah blah blah.  Did you know that blah … blah … blah …” and as I looked at her waiting for my turn to talk, she finished with, “ … blah … blah … blah … well talk to you later.” And she disappeared down the stairs.  I was left with my mouth gaping.  I laughed and continued on my way up, wondering if she realized that I hadn’t said one word to her.

A wise old owl lived in an oak; the more he saw, the less he spoke;
the less he spoke, the more he heard; why can’t we all be like that bird?

Besides listening to the words and meanings that people are trying to express to you in speech, there is so much more to be an attentive listener for.  Just this morning, as Ted and I were getting ready for the day in our bedroom that faces the back yard, I heard the sweet sound of children’s voices.  I hushed Ted and made him listen.  It was the neighbor kids playing in our back yard.  It was the sweet sound of Spring!  After a long cold and silent winter, we finally have peeks of green plants and the lively voices of children playing outside.

It’s easy to entertain some people.  All you have to do is sit and listen.

At work we use a chime system for different alerts.  When a patient arrives in the front waiting room, there is one tone that alerts our pre-op staff that another patient has arrived and we can get them and get started with their case.  Two beeps mean a patient is done in the operating room and I can go get them to take them to recovery.

The first step to wisdom is silence; the second is listening.

Since Amanda moved into her apartment, I have had her text me every morning when she gets up.  The small text chime my phone makes tells me that she is awake and is up in her wheelchair.  The other morning she decided to call me instead of text.  A ringing phone at 6am usually means she is sick, or stuck, or needs assistance.  The jolting sound of the phone had my half-awake body stumbling out of bed to find the ringing house phone as panic quickly raced through my body.

A winner listens; a loser can’t wait until it’s his turn to talk.

So what about listening to God?  Some people don’t think He exists – they say they don’t see Him – or hear Him.  I say – Are you listentogodlistening?  Are you so busy, like my church friend, doing all the talking TO God?  At work, when I was a new employee, I didn’t always hear the 2 tone chime.  It took practice.  Now I can be busy with another patient, and yet I hear that chime every time.  And even Amanda’s morning text; I used to wake every morning when I heard it.  Now I can hear it in my half-sleep and know she’s safe,
and fall back asleep.  If you’d like to hear from God, try listening.  You might have to stop what you’re doing, or practice your listening skills.  You may have to shush some other noises and focus on what you hear – and like the sweet sound of children’ s voices in the yard after a long cold winter, you may hear God talking to you.  You don’t want to wait until He has to call with bad news, like Amanda’s early morning phone calls, that will have you stumbling out of bed and scared at what the call is about.

Just listen.

Just Laurel

John 8:47 Whoever is of God hears the words of God. The reason why you do not hear them is that you are not of God.”

Proverbs 2:1-5 My son, if you receive my words and treasure up my commandments with you, making your ear attentive to wisdom and inclining your heart to understanding; yes, if you call out for insight and raise your voice for understanding, if you seek it like silver and search for it as for hidden treasures, then you will understand the fear of the Lord and find the knowledge of God.

John 10:27-28 My sheep hear my voice, and I know them, and they follow me. I give them eternal life, and they will never perish, and no one will snatch them out of my hand.

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refiner’s fire

April 2, 2014 Leave a Comment

I made it to the gym this morning. It takes a committed push from deep inside myself – but I always feel accomplished when I’m done. Never any regrets for going. My main goal when I work out is NOT to sweat buckets on the tread mill or elliptical (I don’t like that machine) but to work with the weights and build muscle. More muscle means a leaner, more toned body as well as strength and a faster metabolism. The technique for building muscles is to do a repetition of a weight exercise until you can’t quite finish that twelfth rep. And you do three sets of twelve. Just when you can’t do another repetition and it starts to hurt and burn a little; it means you are tearing muscle fibers. The mechanism (in layman’s terms here) is that the tears are little bits of muscle damage that is GOOD for your muscle because the next day, when you rest that muscle, it will repair itself and even make a little more muscle – and that means an increase in muscle fibers.

So now let me couple that thought with what I read this morning.

🙂

Psalm 66:8-10 Praise our God, all peoples, let the sound of his praise be heard; he has preserved our lives and kept our feet from slipping.  For refinersfireyou, God, tested us; you refined us like silver.

Precious metals must be heated at high temperatures so that all impurities are removed. So what does this have to do with building muscle you ask?

Unless our muscles are challenged and even ‘burned’ so to speak, they will not change or grow. The same is true in our lives. We could be living life on a pretty comfortable path, but unless we are tested by challenges, we will stay the same and never grow. God will put situations in our lives from which we may never be the same again. He is helping to refine us; get rid of the impurities; so that we may become more like him.

At the gym, it is so easy to reduce the amount of weight that I am working with – I just may not be motivated that day or feel like working hard. Many times God sends us life challenges where we cannot always so simply remove the extra weight.   We have to carry it. Sometimes it hurts.

But if we are faithful and true to trust Him, He has promised to be with us to the end and will carry that burden for us. He will refine us and we will be better people in the end.

No pain no gain baby!

Just Laurel

Isaiah 48:10  See, I have refined you, though not as silver; I have tested you in the furnace of affliction.

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splash of happy

March 31, 2014 Leave a Comment

joySecurity cameras. They are everywhere. Their purpose is to catch people doing BAD things. If there weren’t people robbing banks, stealing from stores, or vandalizing things, then there would probably be no need for them.

I watch a lot of short videos presented on line by www.faithit.com. I love what they report! Instead of all the bad and horrible news stories of murders, robberies, dirty politics, etc., they post up-lifting stories that splash some good news in the midst of all the worldly bad stuff.

So those security cameras? Faithit put together a short video of all the GOOD things some of these security cameras caught on video recording. And in the midst of my very busy and stressful day, I happened to watch this video via Facebook (If you “like” faithit’s Facebook page you will get notification of the videos they post each day on your Facebook newsfeed).

It put a smile on my face.

Hope it makes you smile, too.

So – I am too busy to blog today but not too busy to share a little splash of happy with you. I think the lesson here is to expect the UNexpected and to look for the JOY and the HAPPY in life everyday – instead of hunting down only the bad stuff with hidden cameras.

http://www.faithit.com/acts-of-kindness-caught-on-camera/

just Laurel

btw – The NEW blog/website IS COMING SOON!

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self advocacy

March 29, 2014 Leave a Comment

Your three-year-old demands jelly beans and soda pop for lunch. Giving it to him or her would make them so happy. Will you do it?

Ninety year old grandma insists she can still drive despite her growing dementia. She demands her rights and demands the car keys. Do you let her have them?

Your son refuses to check his sugar and take his insulin shots while eating a diet high in sugar. He is so happy when he can eat what he wants to. Do you allow him to endanger his health and risk his life?

Why do people think that the best thing for each of our own selves is to have the things that make us happy? Is quality of life based on getting what I WANT? Is life really about me me me? I am so overwhelmed with the whole idea of self-determination and self-advocacy. Here are some definitions to help:

self-determination n 1. The power or ability to make a decision for oneself without influence from outside.

Definition of Self-Advocacy Self-advocacy refers to:an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. It involves making informed decisions and taking responsibility for those decisions. (VanReusen et al., 1994)Self-knowledge is the first step towards advocating for your rights. You need to know your strengths, needs, and interests before you can begin to advocate.

I’m sorry but in all realty, we don’t always know what is best for ourselves. As children, we need direction and guidance from loving parents. Even as young adults, we benefit from truthful advice of friends and critiques from our bosses at our jobs. Elderly people need to consult their physicians for sound medical advice and be open to making changes when older bodies can’t keep doing what the younger one did.

So – what am I talking about?

🙂

WHY am I talking about this?

We are looking at another place for Amanda to live. Yes, she loves her apartment, but there have been some night problems and safety issues, as well as her need for more socialization that has prompted us to start looking. Amanda is nervous because she does not handle change well and is freaked out about moving. We would, of course, help her adjust and try to make the change gradual.

But I am so angry.

I am livid.

A few weeks ago Amanda met with her caseworker. I was there as well. We were discussing getting more staff for Amanda and/or moving her somewhere else. Amanda wasn’t saying much and her caseworker said with a smug and patronizing little smile, “I know how hard it is Amanda to say some things in front on your parents.”

WHAT???

Doesn’t this chick understand that I’ve already spent 30 years praying I’ve made the right and best decisions for Amanda? I stood up and told her I’d be happy to wait in the hall. When the caseworker finally left, I told her that I would have to speak to Ted and discuss things. I’d get back to her the following week.

About a week after that, Amanda ‘fessed up to me and said that when I left the room, that the caseworker offered to Amanda a paper she could sign so she could be her own advocate.

WHAT???

This caseworker has no clue. How has Amanda lived this long, done this well, and succeeded in so many areas if it weren’t for the exhausting yet loving care that Ted and I have tried to give for all these years? Really? Have we made BAD decisions for Amanda? And the bottom line is, Amanda may be able to tell you what she likes … but she can’t always be sure of what she needs. To self-advocate, the above definition states that she must make INFORMED decisions and then take responsibility. I am so tired of the whole mental health group of people insisting that special needs people have the right to self-determination and to be able to state what they WANT.

You might as well fill the baby’s bottle with Kool-Aid and give grandma the car keys!surrender

So now let’s get some religious input on all of this. Our loving God has given us free will. It’s up to us – we can choose good or we can choose evil. We can follow Him or we can live a worldly life with material gratifications. But when we surrender ourselves to Christ, He will direct our paths and give us what we need.  And we might not always like what path our life takes, but in the end we always see that Father knows best and we are blessed. To me – to follow Christ IS like being set free. Choosing God’s will over our own is no easy feat. But if we truly trust God, we’ll have the strength to let go of our wants and passions and believe that His will is perfect, right, and the very best thing for us.

Amanda, honey, I only want what is best for you and to see you happy and safe.

Sorry for the lengthy rant here folks – just offering a taste of the frustrations Ted and I face some days.

Oh – and thank goodness Amanda was wise enough to NOT sign that paper.

But still …

Just Laurel

Proverbs 3:5-6 Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

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just pray

March 26, 2014 Leave a Comment

At the surgical center where I work we have different doctors using our facility each day to perform eye surgery on their patients. Our doctors prayare male and female, old and young, and from various ethnic backgrounds.

One day many months ago, Dr. Farid (NOT his real name  🙂  Names have been changed to protect the privacy of those I write about) had finally arrived to perform surgery. His patients had already arrived and we had them ready and waiting for their procedures. I watched Dr. Farid go into the restroom. Many minutes passed by. “Oh GEEZ,” I thought. He’s been in there a LONG time and we all know that a guy, in the morning, in the bathroom, and for a long time can only mean one thing. And I was not going in there to pee for quite a while after HE got done if you know what I mean. I mentioned to a co-worker who had worked there longer than me, “Dr. Farid has been in the bathroom for quite a while now.” Her quick and easy response was…

“He’s praying.”

What??

Now I don’t know if Dr. Farid is Arabic, or Muslim, or even what country he is from. I do know that he is a very nice man and treats his patients with great respect. I also know that if I were going to have surgery, I sure would be pleased to know that my surgeon prayed before operating on me.

On surgery days when Dr. Farid is operating, it is now part of the expected sequence of the morning to see him disappear into the bathroom before any surgery begins.

Why can’t we Christians be more devout and unashamed about our faith?

What if we all got on our knees before starting our day?

Now we might not all be going to work to perform critical or even life-saving surgery on patients each day, but don’t you think we could pave the way to a better day if we asked God to join us and lead us?

Thank you, Dr. Farid, for your example.

Just Laurel

1 Thessalonians 5:16-18  Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

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frozen threats

March 24, 2014 Leave a Comment

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 andcaregiverimage 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.

Leave a Comment Filed Under: Amanda, Perfectly Made, Just Laurel Thinking, Moving Amanda Out

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Hey – it’s me! just Laurel. I am just a 50-something year old mom who lives in southeastern Michigan. Married forever to the love of my life, Ted. We are just like any other family with kids out there: working hard and doing our best to raise great kids and to live as decent, moral people.

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