tWo mOnThS

June 26, 2014 Leave a Comment

I CARE for you Fridays.
My Friday blogs are devoted to all caregivers out there but may inspire just about anyone reading.

(My Friday blog is out a day early – but circumstances nudged it out a day early because I had to write while this whole mess was fresh.)

So … I am stunned. I am frustrated. I am broken.

Quick update on those of you who don’t know the full story (and click on the ‘About’ tab on my website homepage and then ‘Amanda updates’): Amanda has been living in her own apartment for a year and a half now. She loves her apartment. We have staff that comes every day to help. At night, Amanda needs to wear an AVAP mask to remind her to breathe when in a deep sleep. She has been taking the mask off in her sleep. This is not good for her health and could lead to respiratory failure.

It has been our attempt to get her more staff so that there is someone there at night to check on her every hour and make sure her mask is kept on.

We first thought of moving her into a group home where there is twenty-four hour staffing. We were scared for her health and almost had her moved. Our gut told us that this particular home was just not the right place for her. We changed agencies and caseworkers to what we thought would be better services for Amanda – and our plea for help for Amanda and the urgency for her to have help at night started TWO MONTHS AGO.

We finally had the mandatory ‘budget meeting’ to help get things moving. (Why didn’t Amanda’s caseworker have us do this 2 months ago?)

In the meantime, we are down to only one staff worker who is wondering if she will even still get paid until the budget gets passed. AND it means that I am the other staff for Amanda right now. That’s okay. I’m her mom and of course I’ll help out with my daughter as much as I can. But keep in mind that Amanda loves her apartment and life independent of her mom and dad and is happy to have others around her – not her mean old mom all the time. AND keep in mind that I have already been taking care of her for over 30 years. AND keep in mind that I have been spending two to three nights a week at Amanda’s apartment to make sure she keeps her mask on. Like last night. I sleep on the couch and my phone alarm wakes me every hour so I can go check on her. It’s not a very good night of sleep – not getting any REM’s. And then I got myself to work at 6am.

In two weeks and a couple of days I am supposed to go to Guatemala on a mission trip with my church. The plane ticket was bought a long time ago and we’ve been planning this for a while. That’s why I started TWO MONTHS AGO to make sure I had Amanda all safe and taken care of.

NOTHING HAS HAPPENED YET.

I call Amanda’s caseworker almost every day – and mostly I get to leave messages. I try to convey my frustration and suggested that the urgency of this matter that I spoke about 2 MONTHS AGO is now getting to be an emergency. Well Miss Caseworker called her supervisor and Mr. Supervisor said, “If it’s an emergency, then you need to place her in a group home.”

Amanda would be devastated if we suddenly threw her into the group home. What do we do with all her stuff in her apartment? What about the lease we have for the apartment? Does he want to put her in the group home for – how long? A week until we work things out? Two months? And then move her back? Would Mr Supervisor take any of his family members and make them move temporarily like that? And the group home workers – do they know how to take care of Amanda? NO. They would have to be trained. How much time would that take?

AND YOU THOUGHT THAT OUR VETS HAD IT BAD WITH THE MEDICAL CARE OUR GOVERNEMENT WAS (NOT) PROVIDING THEM?

This is just more government Bullsh*t. I’m sorry.

Ted and I talk all the time – that there HAS to be other parents like us with special needs adult children who, like us, just want a safe and happy place for them to live. Are you guys out there? We dream that if we win the lottery, we would start such a place. It would be an apartment building with stores and businesses on the main floor – potential jobs for some of the abler residents! And we’d hook up with a university that could have nursing students, PT and OT students, and psychologists that could do internships with the residents – provide care and LEARN what life is really like for this population. It would be a community with activities and services for everyone.

Is there such a place already?

Would you like to help us start one?

In the meantime, I can only ask for prayers that things will work out for Amanda.

Again – I ‘m sorry folks – but I am trying to cope with the wake-every-hour night I had and a full morning at work – followed by the rotten not-so-helpful communications with Amanda’s caseworker.

Please pass this on … And please offer your viewpoint or suggestions.

And please pray. Maybe this is part of a bigger plan that God has not revealed yet to me.

just Laurel

… accept help …

June 13, 2014 Leave a Comment

I CARE for you Fridays.
My Friday blogs are devoted to all caregivers out there but may inspire just about anyone reading.

I have been meeting regularly with the team of people that I am going to Guatemala with in July for a week-long mission trip. At the last meeting Pastor Rick spoke excitedly about our trip and how he is anxious to see how the Lord will use the bunch of us to form relationships with and provide medical and dental care to the people of Guatemala. He explained how if just HE were going to Guatemala, that he would be limited to what he could get done. But when you can pull together more people and the talents those people bring, well then you can accomplish so much more.

It made me think 🙂

All you caregivers out there (and this is not exclusive to caregivers – but applies to any and all people) can accomplish much more if you would accept the help of others. Why is it we are always so quick to help others but hesitant to say YES when someone offers to help us? Nobody says you have to be the hero and take care of your burden (whatever or whoever that may be) by yourself! Make a list of tasks that others could do to help you so that when they ask if they can help, you can be ready to give them a choice of ways they can do that. If you are a caregiver to an older or needy person, maybe you could have someone run an errand for you from your list – maybe picking up some groceries, cooking a meal, or even spending an hour once a week with the person you care for to give you a break.

Even Jesus did not work by himself. Jesus called his twelve disciples to learn and follow in His example. He taught them to pray and minister to the people. And when Jesus needed time for rest and prayer, He had them go with Him to the garden to pray.

If you are so quick to run and help others, keep in mind that there are others who want to reciprocate and help YOU. Don’t be so stubborn.

Hey – we all need a little help from our friends!

just Laurel

Galatians 6:2 Bear one another’s burdens, and so fulfill the law of Christ.

care giver

June 6, 2014 Leave a Comment

I CARE for you Fridays.
My Friday blogs are devoted to all caregivers out there but may inspire just about anyone reading.

We are all caregivers.

Oh yes we are!

Oh yes YOU are!

You might argue that you don’t have an elderly parent whom you are responsible for. Or you may not have children to care for, or ailing friends or family to tend to, and you may not have any experience with assisting someone with special needs.

But there is more to caregiving than that.

If I can take the definition of ‘caregiver’: someone who takes care of a child or an adult who is sick or unable to care for themselves and stretch it a wee bit then I shall enhance the definition to include this: someone who shows care in the form of compassion for another who is hurting – whether physically or emotionally.

And what is your point, Laurel?

Just over a week ago, Ted’s mom passed away. It has been a wave of love and compassion in the way of all the kind cards that Ted has received from people. What a blessing to have people shower Ted with care by taking the time to send a card …. giving of their time and a few kind words. Many cards came from mere acquaintances. Yesterday at the memorial service, both Ted and I were so appreciative of the people who drove from the far sides of the state, as well as up from southern Ohio and Tennessee to be there for Ted and his family. Those travelers took several hours of their day when they could have been doing so many other things instead, to travel and spend time to mourn with us. Care givers.

So, you see, you don’t have to be full time at the occupation of caregiver. If you have received this kind of care already from someone, than you know what I am talking about. But if you see someone who is grieving and could use some kind words or a few moments of your time – do it! What you say and do is like a healing balm to a hurting heart. To know that other people love and care helps to make the grieving hole in your heart a little smaller.

Thanks friends 🙂

just Laurel

Philippians 2:4 Let each of you look not only to his own interests, but also to the interests of others.

Ephesians 4:32 Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.

John 13:34-35 A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another. By this all people will know that you are my disciples, if you have love for one another.”

Proverbs 21:13 Whoever closes his ear to the cry of the poor will himself call out and not be answered.

1 John 3:17-18 But if anyone has the world’s goods and sees his brother in need, yet closes his heart against him, how does God’s love abide in him? Little children, let us not love in word or talk but in deed and in truth.

1 Timothy 5:8 But if anyone does not provide for his relatives, and especially for members of his household, he has denied the faith and is worse than an unbeliever.

restore

May 31, 2014 2 Comments

I CARE for you Fridays.
My Friday blogs are devoted to all caregivers out there but may inspire just about anyone reading.

Hey all you caregivers out there.

I understand.

You put the needs of that person you care for before your own. And then everybody tells you to take time for yourself. But you don’t feel like you can. You are too busy.

We’ve had issues with Amanda lately – health issues – and a change of agency services for her as well as a new case worker. Ahhhh! It can be overwhelming. On top of that, I have a job and church responsibilities. What? Take time for myself? Ha. I was too stressed to do that!

I kind of felt like this:

Until…

My toenails.

Yeah … they were getting kinda long and with the warm sandal weather happening that all I really wanted was a pedicure. So, Amanda seemed to be doing well today and I felt caught up on things. Many stressful issues were not so stressful today. I called to schedule a last minute pedicure for this afternoon. I figured they would probably be booked but I tried anyways. Viola! They had an opening just when I wanted it. Now look at my tootsies!

Oh I did not solve the problems of the world today. But I got a pedicure. And my feet felt wonderful and my toes look cute. I am happy.

Take time for yourselves fellow caregivers. You’re worth it. And it will make you happy.

But then…

You can get back to work.

By the way – the color on my toenails? It’s called ‘My Chihuahua Bites.’

Fitting don’t ya think?

just Laurel

Psalm 51:12 Restore to me the joy of your salvation and grant me a willing spirit, to sustain me.

the game

May 23, 2014 Leave a Comment

I CARE for you Fridays.
My Friday blogs are devoted to all caregivers out there but may inspire just about anyone reading.

Sometimes caregiving makes you feel like you are playing a game.

I like to play games. But I don’t like playing this game.

It feels like …

… like I am forced to play a game of football every day. Now I like to watch football games when it is someone I know who is playing or a big game like the Superbowl. But I don’t play the game.

Oftentimes caregivers are forced to make decisions for the well-being of the loved one they care for. Sometimes that loved one does not understand the decisions that are made for them and may rebel at what may be planned. Doctors, therapists, and caseworkers may not be on the same page with the caregiver and may even fight against your plans and sabotage everything by adding negative comments for the cared one to hear.

Ted and I only want the best for Amanda. Due to health concerns, we have been forced to make changes that she is not dealing well with. We really want her to be happy, healthy, and thriving. But almost every day for the past month I feel like I have to wake up and go play the game. If the football is a measure of where Amanda’s health is and a touchdown is the ultimate good place we can end up with her, then every day I feel like I struggle to gain yardage and move the ball. The defense against me is brutal. Delays in processing the paperwork, phone calls that are not returned, people adding their negative two cents, and misinformation that mucks things up are all defenses that seem to batter me. Some days I look up and I even see Amanda on the other team playing against me.

Any caregivers out there feel the same way?

Yesterday I decided, finally, to have a day where I was NOT going to play the game. I was tired of chasing people with phone calls, worrying about deadlines, and wondering if I was truly making the right choices. I was too tired to play. I was almost too tired to even care. And then …

I just prayed and let it go. I asked God to handle it all. I did just one thing today that enabled us to have more time to make and fulfill our decisions, but otherwise I stopped worrying and I stopped making phone calls. I guess you could say we are in a very long time out.

It is refreshing to not have to wear myself out with playing the game today. It is giving me time to relax and reevaluate.

So if you are a caregiver and you are stuck playing the game – you know what I mean – and I know how you feel. But I have found that it seems like a good thing to demand a time out every once in a while so I am passing on that suggestion to you.

But don’t you worry – I will be back playing the game soon!

I may change my strategy or even try for the field goal.

Just Laurel

Hebrews 12:1-3 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

He knows

May 16, 2014 Leave a Comment

I CARE for you Fridays.
My Friday blogs are devoted to all caregivers out there but may inspire just about anyone reading.

As caregivers, we spend hours taking care of our loved one. Many of us have been at it for years. We know what the person we care for likes, does not like, their quirks and habits, when they are getting sick, and the best way to tend to personal needs. Sometimes we feel like a Siamese twin to the one we care for as we often anticipate that person’s needs before they do.

And then we meet with a doctor, caseworker, or therapist who smirks when we describe a problem or a need in regards to our charges. The “professional” doesn’t believe us. They think we’re crazy! They believe that the book knowledge they have obtained is far more accurate and valuable then the personal tutorial we have had for months and years.

Really?

If you have read Amanda, Perfectly Made then you know my story of how Ted and I many times had to be persistent and stand firm to get the doctor to take another look at Amanda. The nurse’s poo-pooed our concerns and thought they knew better. Our stubborn stand finally paid off and once it even saved Amanda’s life!

Dear Caregiver: The person you look after is so lucky to have you! I know you have had to stand firm and push an issue when it was needed. Don’t ever back down when you know you are in the right!

Christ is OUR perfect caregiver. He created us and knows us intimately. He knows what’s on our minds and what’s on our hearts. He knows our needs. He knows our name. He calls us His own and will fight for us.

So, dear caregiver, remember that Christ is taking care of you when you are being Christ-like and caring for another. Stand firm when you have to!

Just Laurel

Isaiah 43:1 But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel: “Fear not, for I have redeemed you; I have called you by name, you are mine.

John 10:14-15 I am the good shepherd. I know my own and my own know me, just as the Father knows me and I know the Father; and I lay down my life for the sheep.

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