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