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???

Am 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

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!

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.

(This blog is the eleventh in the series about “Countdowns” as I count down to Amanda’s moving out and count down to the Celebration Concert.)

If.  This one little word made itself largely known to me today.  And it has helped put together today’s blog.

Think of how many times we use the word ‘if.’  With pangs of regret, we often lament and say, “If only” this and “If only” that.  If only she had gone to the doctor sooner.  If only I had picked up the phone when he called.  If only I had remembered to set the alarm. If only I had taken the time.  And then, what about the “What ifs?”  Oh there are so many of those!  What if the snowstorm hits and I miss my flight home?  What if the diagnosis is cancer?  What if I can’t find a job?  What if I can’t afford the house payment?  And then there are the oh-so-popular “If – then” statements.  If you eat your vegetables, then you can have dessert.  If I get that raise, then we can afford a vacation.  If he doesn’t get home in time, then I will go without him.

Then there are the idioms and phrases with ‘if.’

Damned if I do, damned if I don’t.
(Please pardon the explicative.)

No ifs, ands, or buts.

As if.

We get the keys to Amanda’s apartment tomorrow.  Yay!  But here is my ‘if’ report (not at all related to an ‘ef-ing’ report … sorry … I do not like that word and you will never see me use it – but I had to pun!)

If I had all her stuff packed up and if all the staff was ready to go – and if my morning surgery goes well and if I feel okay in the afternoon – we could have Amanda moved in tomorrow.  We are all ready for this big move – if only it were a done deal by now then I could relax.  What if there are any more delays – I think I will scream!  But ask Amanda – I’ve done a lot of screaming this week!  Oh Lord, if only the neighbors could hear me.

Four days to concert.  (If only my scratchy throat would go away.)  Song number eleven is another new one.  It is titled:  “This is Christmas” and the lyrics ask the question, what is Christmas?

What is Christmas if there never was a Savior wrapped in a manger?
What is Christmas if the angels never sang, “Glory to the newborn King”?
What is Christmas without Christ?

A couple of years back, retail clerks were warned not to dismiss a customer with “Merry Christmas” but had to say “Happy Holidays” instead.  Puh – lease!  I was infuriated!  We celebrate Christmas because of the birth of Christ!  Those are Christmas trees y’all are decorating with!  It’s called Christmas because the Son of God was born and heaven rejoiced.  Angels sang and a big star shined in the East.  If people hadn’t recognized and believed in the birth of the savior, we wouldn’t even have a Christmas.

So…

I have a busy couple of days ahead of me.  First there is surgery tomorrow morning to remove the tumor on my left hand.  (No, I am not nervous!)  Then the rest of tomorrow, Friday, Saturday, and Sunday will be focused on the remaining rehearsals that culminate in Sunday’s concert as we also work each day on gradually moving Amanda’s stuff over to her new place.  By Monday, my hand will be just fine, the concert will be over, and Amanda will be moved.

No ifs, ands or buts about that!

just Laurel

(This blog is the tenth in the series about “Countdowns” as I count down to Amanda’s moving out and count down to the Celebration Concert.)

Two days and we get the keys to Amanda’s apartment.  Most everything is falling into place.  Since we initially were moving her to Canton, some forty plus minutes away, our change to moving her five minutes away made for a ‘blip’ in our plans.  The blip is that the staff we were lining up to use in Canton are not the same as the ones here in Woodhaven.  Drat all the paperwork and hiring requirements!  We are still pretty much on track, but little changes sure can put bumps in the road of well-made plans.

It’s like the blip that happens when you map out a road trip.  You weren’t expecting that flat tire, were you?  That one change, that one unplanned for thing tries to upset your whole apple cart.

I have a friend who was braving a new meatloaf recipe.  The ingredients called for included a can of cream of mushroom soup.  In typical mom-haste, because moms are busy and distracted by small people, she tossed all the ingredients in the bowl.  As she tried to mix everything together into a loaf, well things weren’t really coming together.  The blip was that the mushroom soup was supposed to be poured over the meatloaf and not mixed in.

Another frequent blip people encounter is this:  Just when a husband and wife have reached their goal of having two children, the perfect house, and comfortable jobs, baby number three happens.  Talk about upsetting the ‘ole apple cart!  That happened almost two thousand years ago to a couple named Mary and Joseph.

Song number ten in the Celebration concert this Sunday is:  “A Baby Changes Everything.”  Mary discovered she was pregnant and, oops, it didn’t belong to her betrothed, Joseph.  Good thing the angels explained it all to them.

But …

I think it is significant to look at how others react to blips in their lives.  How about how each of us reacts?  That blip, or change, or alteration in well made plans can foul or fuel.  If we get all upset when little disturbances or snags in life happen then we probably won’t make much progress or distance in what we do with our lives.  When the snags happen, it’s as if someone has cried “Foul” and we stop the play in our game of life.  But if we use the small snags or blips as exercises in faith or strength and face them with determination, then we can let them act as fuel to move us to our goal!

We have a couple of great young ladies who want to be staff persons for Amanda.  They are getting all the hiring mumbo-jumbo taken care of and are not allowing the snags to stop their progress.

And that flat tire?  If you really want to reach your destination, I bet you got your tire fixed and kept driving.  So what if you were a little late.

My friend’s meatloaf ended up more like a stroganoff and was delicious!

And that baby?  We all know that Mary and Joseph carried on with the plan.  Having a baby really changed things for them because of how it all happened.  They were very brave.  But what is really a miracle, is that not only did it change things for their own personal lives, that little baby Jesus changed EVERYTHING for the people of the world!

A Baby Changes Everything.

just Laurel

(Don’t be afraid of blips!)

(This blog is the ninth in the series about “Countdowns” as I count down to Amanda’s moving out and count down to the Celebration Concert.)

You’ve heard the expression, “It’s like riding a bicycle.  You never forget.”  I was feeling that today.  Not the bike riding part.  It was the memory of some not-so-nice days gone by that I was experiencing a similar day today – and all the feelings came rushing in like it was yesterday.  It was like getting back on that bicycle for a ride I did not want to take again.  Ever.

Why, yes, I will explain for you.

For those of you who don’t know, about a year and a half ago my husband moved back home.  He had been living and working for about a year and a half in another state while I stayed here with Amanda.  I had to stay here and try to sell the house.  We saw each other most, but not every weekend.  It was a sad, lonely, disjointed, miserable, lousy year and a half.  Neither of us liked it.  I pretty much survived by going through the motions and hanging on to my sanity by my fingertips.  Ted and I never want to live like that again.  We do much better as a couple.  Together.  But last week his job took him out-of-state and he was gone from Monday morning until late Friday evening.  Oh, Lord, it felt just like before.  The week dragged and I felt stuck in a lonely limbo world.  We both had the same nauseating feelings come back and sweep over us.  And just like before, after being together for the weekend, he up and left again this morning.  Out of town.  Out of the state.  Hopefully home this time on Wednesday.  But, we both just feel awful.  Like a bad dream come back to haunt us of a time we want to forget.

As I felt myself spiraling downward today and being sucked into those horrible feelings of past days, I realized I had to change directions and at least get out of the house.  I told Amanda to get her jacket on and off we went.  I surprised her by swinging past her apartment.  We were told we could come check it out now that it has been cleaned and readied for us.  I think she really liked it.  We will get the keys in three days.  The apartment has not been modified to be handicap accessible but Amanda usually fits most places we go because she and her wheelchair are pretty petite.  There were only two major things that she couldn’t reach:  the bathroom faucet handles and the button buzzer that she pushes to let people in.  I asked if we bought a bathroom sink faucet with handles she could reach – could we or they install them.  No problem.  The manager was also nice enough to offer to move the security buttons on the wall down lower for Amanda to reach.  We’ll get things changed a bit and Amanda will be settled in before we know it.  She can take all her habits and rituals and routines that are performed in this house and start again at her apartment.  It’ll be like getting right back on that ‘ole bicycle – different place, but same old familiar ride.

Six days until concert.  I hope we have a full house!  If you have journeyed with me on these last nine blogs about ‘count downs’ you will know that we are talking each day about another song from the concert, and I have been discussing them in order.  The second half of the concert takes us into Christmas.  The ninth song is titled, “Night Divine.”  The night that Christ was born was like no other.  There was nothing familiar.  No one could say “Oh, I remember that happening once before.”  There was no getting back on any familiar bike ride.  This was out of the ordinary.  The new King of Kings was a baby!  The lyrics tell how it felt:

O night divine.  Hear the angels singin’, “Holy are You, Lord Most High.”
The saints proclaimin’, “You alone are glorified.”
The stars exclaimin’, “O night divine, O night divine.”

It is a new song for Celebration to be singing.  And it is one of my new favorites.

I will survive Ted being out-of-state and gone.  It’s a familiar ride and I know there is an end.  I’ve gotten through it before.  I just don’t like it.

The birth of Christ some two thousand years ago?  I don’t think the world has gotten over that one yet!  His birth changed everything!

It was divine.

just Laurel

(This blog is the eighth in the series about “Countdowns” as I count down to Amanda’s moving out and count down to the Celebration Concert.)

Nothing much has really happened in the past couple of days that has any significance to Amanda’s move in four days.  We know we get the keys on Thursday and living room furniture is being delivered on Friday.  We have stuff here to pack and move over to her apartment.  I have to call on the billing this week for her utility bill and check on setting up internet service for her.  We have our staff people, but they are still jumping through the orientation hoops at the Guidance Center.  I think it will be a slow move – meaning it won’t all happen on Thursday – but gradually over the long weekend from Thursday through Sunday.  That’s okay.

It is rather like a dream come true – finally – for her to be moved to her own place.  It’s about time, don’t you think?  It has been twenty-nine years of dreaming.  Not the dreams you have when you sleep, but the wish-upon-­a-star kind where you really, really hope for something.  We’ve had dreams for all of our children through the years, like everyone does.  Dreams that our children will grow up happy, be successful, will attend the best college, graduate with honors, get a great job, find the perfect spouse, live a good life.  The dreams-come-true hasn’t always happened for Amanda.  We’ve had some challenges along the way!  But we will take whatever we can get.  I hope she loves being lord and master over her own place and really takes personal ownership of things.  For Amanda to be living in her own place has always been a dream for Ted and me.  It will also be so nice for Ted and me to be a couple again – and not a three-some.

I happened to sit down with Ted this afternoon as he was watching an episode of “Once Upon a Time.”  It is a TV series that looked good to me from the commercials, but one I never got around to watching.  The series takes place in the fictional seaside town of Storybrooke, Maine, in which the residents are actually characters from various fairy tales that were transported to the “real world” town by a powerful curse cast by the Evil Queen.  It really is a creative concept the writers came up with for this television show.  Each episode focuses on a character back story. One segment details their life in the fairy tale world that, when serialized, adds a piece to the puzzle about the characters and their connection to the events that preceded the curse and its consequences. The other, set in the present day, follows a similar pattern with a different outcome but also offers similar insights.  The episode that Ted was watching involved the seven dwarfs – but Grumpy was actually named Dreamy.  Although a dwarf, he tended to dream about other things, places, and a life apart from the mines.  He falls in love with a beautiful young girl who is trying to learn to become a fairy godmother.  They dream together of literally sailing off in a small ship and seeing the world together.  The blue fairy, who is head of all the fairies, gives Dreamy a talking-to and tells him that his fairy girlfriend should be left alone to become a fairy godmother and for him to return to the mines where he belongs.  It made me so sad – because that’s just what Dreamy felt resigned to do!  His dreams were squashed!  In this television story, the dwarves get named by their mining pick-axes and as the dwarves grab the wooden handles, their chosen names appear on the handle.  Poor, sad Dreamy goes back to the mines and grabs a new pick-ax.  The name “Grumpy” carves itself into the handle, forever labeling the former Dreamy to his new persona.

I was so saddened by Dreamy/Grumpy’s shattered dreams!  I think he and fairy girlfriend should have gotten out of there!  Again – very creative writing on the part of the TV series.

So, finally, let us segue into song number eight of the Celebration concert that is happening one week from today.  The song is titled, “When Love Was Born.”  It is a beautiful song that tells of imagining what it was like that night when God’s Son was born.  We know the night was clear because shepherds saw a bright star.  I’ll bet the sky was full of stars along with that one bright one!  Angels overhead were probably vying for the best view and had to hold back their enthusiastic songs of praise for a quiet lullaby.  People had been waiting so very long for a messiah – a king.  They had earthly visions of a wealthy prince being born in splendor and majesty.  Whoever would have dreamed for the King of Kings to be born in a lowly manger in the humble and simple little town of Bethlehem?  My favorite lyric that reflects this thought:  “Bethlehem, through your small door, came the hope we’ve waited for.”

I believe in dreaming.  It is an optimistic way to look at life.  It is synonymous with hope. Aren’t our hopes the same as our dreams?   So if I were to think I was too old, or too tired, or simply done with dreaming would mean that I’ve given up all hope.  Ha!  Not me.

Besides, I’d rather be a ‘’Dreamy” then a “Grumpy.”

just Laurel

They who dream by day are cognizant of many things which escape those who dream only by night.

EDGAR ALLAN POE, “Eleonora

Dreams last as long as you let them … both good and bad.

MICHAEL MARSHALL, The Upright Man

A single dream is more powerful than a thousand realities.

J. R. R. TOLKIEN, New York Magazine, Nov. 20, 1978