Sunday, August 19, 2018

No Rest for the Weary



"So, who helps you out in the home?"  The doctor asks this question and looks at me expectantly.

It's a question I'm used to hearing.  It's one I get asked at every appointment, every in home visit, and at least every 12 seconds when we stay in the hospital.  I always answer the same way.

"My husband helps when he's home.  My son pitches in and does well above and beyond his call of duty and when my parents stay they help out around the house with odds and ends."  I end with a bright smile but I know what's coming.

"But what about nursing care?  Who comes for that?  Do you have any help?  This is an exhausting and demanding job.  Your daughter is 24/7 care.  Plus I see in the records your son has disabilities as well.  You must be so tired and worn out.  Are you taking care of yourself?"   Looks of pity and compassion often follow.  Sometimes I get a hug or a pat on the arm.  Then they wait for my answers on why my magic wand hasn't poofed me up a service staff.

In my state (Virginia) there are waivers.  Cary Lynn is qualified for nursing.  The problem is we are at the bottom of the barrel and on a wait list so long it is a very real fact that my child may pass away before we receive help that may actually help us.  Pay for non skilled attendant help is $9.22 an hour.  No overtime, no benefits, and we are not allowed to add any additional income.  Turnover is high and retaining people is difficult.  The attendant cannot give medicines, drive, and other various restrictions.  Pay for skilled nursing is still low and you are at the mercy of an agency to find (or pretend to find) you a nurse.  I'm on the waitlist as we speak for six agencies.  It would have been eight but one agency told me that they don't work with her waiver because there is no money involved for them and the other agency told me I would be better off putting her someplace since we would be lucky to find any help where we lived.

I wish I could say because I live in the sticks of Virginia this is a unique problem and if I moved to a more populated location it would be resolved.  But it's not.  True, where I live doesn't make things easy but trying to make a living off of $9.22 an hour with no benefits is hard.  Turnover is high and interest is low.  This is a problem that is happening everywhere.

We have had help from the medical community and Noah's Children.  They call agencies for us and advocate.  Two hospitals have put in nursing orders and called my list.  They let me know they are fighting too.  I'm grateful, but not hopeful.  I gave up hope in finding help years ago.  It's easier not to become upset and rattled when you stop hoping.

Not having what you need can impact other ways of life.  I'm not able to work anymore, not because I don't want to.  I miss adults.  I had a fantastic job and loved what I did.  We make it work.  I also miss dates and alone time with my husband. This weekend was supposed to be a get away for two.  Guess who ended up needing to see a gi/motility specialist?  I think my last date night with my husband was about two years ago.  I miss dressing up and going out.  I also don't always go get the medical care I need.  Things change.

I'm also not writing this so everyone feels sorry for us.  That's not what I want at all.  Nor am I this amazing super human who has lived off of bad hospital coffee for years.  I don't want pity.  What I want is change.  If things don't change people like my daughter will continue to be treated like a sin and an abomination from the dark ages to be carted off to an institution. 


My kids are vibrant.  They have fought and will continue to fight.  We've had a few setbacks and scares recently that we are still processing.  But part of what we have learned from this is that we are going to have to fight harder for changes and for my children's rights. Letters have been sent, calls have been made, and we are ready to speak out more loudly than ever.  Change doesn't happen with a magic wave of a wand.  It takes time, hard work, and lots of pushing. I won't stop because the stakes are too high and loosing isn't an option.




- - - - - - - - - - - - - - -

I'm a mother, advocate and blogger.  This blog appears on my blog site as well but it's too important not to continue sharing.  Please follow me at https://manykindsoffamilies.com/

24 comments:

  1. I've read all of your information that you shares in your article and I love it. Many thanks for showing this post. I enjoy it.- 2 player games

    ReplyDelete
    Replies
    1. I want to use this medium to testify of how i got back my ex husband after divorce, i and my husband have been married for 8 years with 2 kids, we have been a happy family. Last year his behavior towards me and the kids changed, i suspected he was meeting another woman outside out marriage, any time i confronted him, he threatened to divorce me, i did all i could to make hings right but all to no avail until i saw a post on a "love and relationship forum" about a spell caster who helps people to cast spell on marriage and relationship issues, when i contacted this spell caster via email, he helped me cast a re-union spell and my husband changed and came apologizing to me and the kids. Contact this great spell caster for your relationship or marriage issues via this email: chiefdrlucky@gmail.com or Whats App him on +2348132777335 Website: http://chiefdrluckysolutionhome.website2.me/ Good luck

      Delete
  2. just information we only provide information for those who need it cara menggugurkan hamil

    ReplyDelete
  3. تعمل شركة اللمسه في مكافحة الحشرات مثل النمل والصراصير وجميع انواع الحشرات بأبها الان ، وتعتبر شركة اللمسه من اشهر شركات مكافحة الحشرات في السعودية , لدينا عمالة مدربة ومتخصصة المواد المستخدمة فى مكافحة الحشرات غير ضارة على الانسان وليس لها روائح نعمل بدون مغادرة المنزل نعمل على راحة عملائنا .
    شركة مكافحة النمل الابيض بنجران
    شركة رش مبيدات بالخرج
    شركة مكافحة حشرات بالخرج
    شركة مكافحة النمل الابيض بالخرج
    شركة رش مبيدات بأبها
    شركة مكافحة حشرات بأبها
    شركة مكافحة النمل الابيض بأبها
    شركة رش مبيدات بنجران
    شركة مكافحة حشرات بنجران
    شركة رش مبيدات بالعينه


    ReplyDelete
  4. هل تبحث عن شركة متخصصة فى خدمات التنظيف بالطائف بافضل المعدات والسوائل وثقة تمة فى العمل ودقة فى النتائج كل هذه المميزت توفرها شركة الخليج الشركة الافضل والامثل فى الخدمات المنزلية بالطائف وبما اننا الشركة الافضل والامثل بدون منافس سوف نسعى لتوفر افضل الخدمات باقل تكلفة وبقدر كبير من الاهتمام والدقة عزيزى اينما كنت فى اى منطقة ا وحى تابع لمدينة الطائف اتصل بنا وسوف نصلك فى الحال شركة الخليج للخدمات المنزلية شركة تنظيف منازل بالطائف
    شركة تنظيف فلل بالطائف
    شركة تنظيف خزانات بالطائف
    شركة تسليك مجارى بالطائف
    شركة رش مبيدات بالطائف
    شركة مكافحة نمل ابيض بالطائف
    شركة مكافحة حشرات بالطائف
    شركة عزل اسطح بالطائف
    شركة عزل خزانات بالطائف

    ReplyDelete
  5. Wonderful site and I wanted to post a note to let you know, "Good job"! I’m glad I found this blog. Your blog site has presented me most of the strategies which I like. Thanks for sharing this.- USPS Tracking

    ReplyDelete
  6. Keep fighting, we are all behind you. Thank you so much for posting this and thank you for keeping us up to date on this, I hope you continue to do so. I know taking time as a Mama is nearly impossible but if you can allow yourself a few minutes here and there, I just finished an excellent book that I think YOU and many other parents would really connect with. Space of Love by Gayle Nobel was such refreshing and heartfelt tribute to parents with special needs children. I'm telling everyone about it because it is a resource we all need. I hope you will check it out, I found more info on Gayle here, www.GayleNobel.com.

    ReplyDelete
  7. Very nice post I really enjoyed it...You can also visit my website for....

    Call girls in Bangalore
    Call girls in Lucknow
    Call girls in Guwahati

    Call girls in Gurgaon
    Escorts in Bangalore
    Escorts in Lucknow

    Escorts in Guwahati
    Escorts in Gurgaon
    Bangalore escorts
    ========================================================================================

    ReplyDelete

  8. Thanks a lot for sharing this excellent post. I am searching this type of post to improve my knowledge and reading habit. Expecting more useful post from here.
    Custom essay writing services

    ReplyDelete
  9. Thank you for sharing the article. I'm glad to hear the information.
    imgrum

    ReplyDelete
  10. Your kids are amazing and no doubt - you are the best mum for them! I completely agree with you that when it comes to parenting, there are many reasons for us to look inward in order to understand ourselves better, if our goal is to become a wise parent. This article http://www.agsinger.com/7-skills-of-responsible-parents-that-make-a-difference-for-the-child/ may be useful for you. I repeat it as a mantra, when something goes wrong :)

    ReplyDelete
  11. heal from broken heart" Love spell from dr.Unity brought my husband back"contact Unityspelltemple@gmail.com to help you get your Ex lover back urgently after breakup/divorce"
    After 12years of marriage, me and my husband has been into one quarrel or the other until he finally left me and moved to California to be with another woman. I felt my life was over and my kids thought they would never see their father again. i tried to be strong just for the kids but i could not control the pains that torments my heart, my heart was filled with sorrows and pains because i was really in love with my husband. Every day and night i think of him and always wish he could come back to me, I was really worried and i needed help, so i searched for help online and I came across a website that suggested that Dr Unity can help get ex back fast. So, I felt I should give him a try. I contacted him and he told me what to do and i did it then he did a Love spell for me. 28 hours later, my husband really called me and told me that he miss me and the kids so much, So Amazing!! So that was how he came back that same day,with lots of love and joy,and he apologized for his mistake,and for the pain he caused me and the kids. Then from that day,our Marriage was now stronger than how it were before, All thanks to Dr Unity. he is so powerful and i decided to share my story on the internet that Dr.Unity is real spell caster who i will always pray to live long to help his children in the time of trouble, if you are here and you need your ex lover back or save your marriage fast. Do not cry anymore, contact this powerful spell caster Dr.Unity now. Here’s his contact: Call/WhatsApp him: +2348071622464 ,Email him at: Unityspelltemple@gmail.com , Website:https://unityspellstemple.blogspot.com ,Your kindness will never be forgotten.

    ReplyDelete
  12. Such a Great Page To Gather Information Doing Good Work By You Guys and Please Keep Sharing with Us vidmate Looking For More Posts

    ReplyDelete
  13. I'm grateful to know you and keep sharing with usVidmate You're more helpful than you realize. Thank you for being there for us

    ReplyDelete
  14. I want to use this medium to testify of how i got back my ex husband after divorce, i and my husband have been married for 8 years with 2 kids, we have been a happy family. Last year his behavior towards me and the kids changed, i suspected he was meeting another woman outside out marriage, any time i confronted him, he threatened to divorce me, i did all i could to make hings right but all to no avail until i saw a post on a "love and relationship forum" about a spell caster who helps people to cast spell on marriage and relationship issues, when i contacted this spell caster via email, he helped me cast a re-union spell and my husband changed and came apologizing to me and the kids. Contact this great spell caster for your relationship or marriage issues via this email: chiefdrlucky@gmail.com or Whats App him on +2348132777335 Website: http://chiefdrluckysolutionhome.website2.me/ Good luck

    ReplyDelete
  15. For Latest updates of Bollywood, Hollywood and Tollywood Check this blog
    Newsvx
    Shahrukh khan upcoming movies
    We are the best event organisers in delhi ncr
    Event organisers in delhi ncr
    social media marketing company in delhi
    Most of the people want graphic design in india to grow there product and brand
    Graphic design in delhi
    Best event management company in delhi ncr
    Webslogin is the best web designing company in india
    best web designing company in India
    Best wedding planning company in delhi ncr
    We are the best web designers in delhi ncr
    web designers in delhi

    ReplyDelete
  16. I will keep it in mind, thanks for sharing the information keep updating, looking forward for more posts.
    Delhi Escorts
    Delhi Call Girls

    ReplyDelete
  17. Excellent article. Very interesting to read. I really love to read such a nice article. Thanks! keep rocking.
    best penis pump

    ReplyDelete