Wednesday, December 14, 2011

What will I get a break?

I'm trying to stay grateful that Nicole will start receiving Medicaid associated with her SSI  on January 1st but honestly, I am so confused after calling Medicaid options.

In some ways I just want to stay with KidCare because at least I have jumped through the hoops and know what I have to do but I know for Nicole's future this is the best.  Nicole at this moment has straight medicaid but I will have to pick a plan for her which I will do but until this time I have to call the labs, the durable medical equipment company and the specialty pharmacy (these are the most important and recur on a monthly basis) to see if they take straight medicaid and then what medical plans they take so I can stay with them without having to switch again.  I will go to the website she gave me that is suppose to have the list of plans.

It really scares me... I am in tears with frustration and confusion regarding all this and I can't imagine how Nicole will be able to deal with this in Sept. when she turns 18.  I get a lot of criticism from my family that Nicole needs to get use to doing all of this herself which I do agree but I also know she isn't ready for it maybe some are but not her.  I spend so much time handling medical issues for her it is my part time and sometimes full time job.  Nicole will be a senior when she turns 18 and doesn't have the time to do this.  I truly believe that I need to get power of attorney so I can have permission to talk to the medical people on her behalf.  I need the strength and guidance to be able to do this without worrying what others think even though they feel I am controlling Nicole's life.  

I just want to scream when will I get a break?  I get a couple of days off with no medical issues and then I am right back at it again.  It seems to take over my whole life and I find it hard to focus on other  areas of my life like cleaning my house. 

I know that God will give me the strength but I just don't feel it right now. 


  1. Hi Jane ~ I know from experience that many times family can made our jobs harder. They don't understand what we go through as caregivers and they don't really understand what our disabled family members are going through. I've had family tell me that if I just disciplined my kids they would be fine. (My teen has severe anxiety & 9yr old is high-functioning autistic).

    I think getting power of attorney may be a good idea for now. Just because Nicole turns 18, doesn't mean she's capable of taking care of these things herself. You know your daughter best, you know what she needs, what she can and can't do. You need the support from other caregivers who can truly understand what you are going through.

    Unless the dust bunnies are holding one of my cats hostage, I don't worry if my house is messy. My house is never perfectly clean and it never will be. I do the best I can. Some days dishes sit a day or two, it's ok. If people don't like how my house looks, they don't have to come in!

    Lastly, it's important to take some time for yourself. If Nicole is ok for a couple of hours, go to the movies or out to lunch with a friend. I love my kids but I need a break every once in awhile. My hubby and I try to go to the movies at least once a month. We'll even just go for a walk or window shop just to get out for a bit. Or take a book, some hot cocoa and a warm bath. You need it and you deserve!

  2. Hi June:

    Thank you so much for your response. My husband and his cousin, who is a female tell me that she needs to do this herself and I coddle her to much. Nicole also suffers from anxiety and has since 10 years old. She can't make decisions most of the time and I have to step in.

    I just hate that when people say if you would just discipline your kids... I have no official diagnosis of this but I know one teen in particular who has asperger's and Nicole and him are like two peas in a pod. She has a lot of social issues with her peers etc. I believe that she falls in this spectrum.

    I know that getting power of attorney is the best for Nicole.

    I like how you put that about the dust bunnies and the cat... I wish they would take my cat hostage especially when she wakes me up at 3:00 a.m. meowing because she ate all her food and is hungry. My house is never really clean but I do the dishes every night but the laundry may sit in baskets for awhile. I really hate this but what can I do?

    I am going to try and take some me time more than I do and I will also try and get some good time management skills which I lack.

    Once again thank you so much for taking the time to post to me.

    Jane ~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS

  3. Jane, As I think I've mentioned, I work with people with disabilities. Many of them will need long-term care and receive Medicaid and SSI. I don't think any of them were ready at 18 to take on the responsibilities themselves! I urge you to get POA and whatever you need to continue helping your daughter. You will both have less pressure if there's not that immediate deadline. After all, when she turns 18 you're not going to be turning her out in the streets! I can imagine a step-by-step gradual allotment of responsibility.

    Of course, this does mean long-term commitment for you, but you have that already.

    I was POA for elderly adults in my family, and although the responsibility sometimes felt heavy, it was worse when I was trying to help them (and they needed the help) but I didn't yet have the authority.

    In the meantime, I hope you can find little pockets of time just for you, so you can restore and rebalance yourself. I advocate writing for very small segments (even 5 minutes) just as a way to communicate with yourself, but you could choose just to sit or breathe or read a magazine. Something where you get to stop and replenish your spirit a bit! Nicole needs you to stay intact!

    Judy Stone-Goldman
    The Reflective Writer
    Personal-Professional Balance Through Writing

  4. Jane,
    Feel free to scream any time. I cannot understand why anyone would think that an 18-year old could possibly be equipped to handle this. Rather than criticizing you, your family should be looking for ways to help and support you!

  5. Jane, Comments from well-meaning relatives really make me want to scream with you! There is no way Nicole should be expected to take on these responsibilities at age 18. It is too much (it's practically too much for an experienced adult so how can anyone expect her to take over these duties?). Robert is on Medi-cal and he has needed assistance with his financial matters since he turned 18. My dad took care of these matters for him for many years (although he didn't do the best job of it but that's another story). I now have power of attorney over him for all medical & financial & personal care needs. With regards to Social Security, they do not recognize POA (it's weird but keep that in mind) so I had to become his Representative Payee. Without it, they would not talk to me (even to change an address). You may not need this level of responsiblity for Nicole when she turns 18 but keep it in mind for the future.

    You know your daughter more than anyone else. She will need you when she's an adult so stand firm and know we're behind you. Think of all of us when you're hearing all this other "advice."

    Also, if you have any questions, please email me. I'll send you my phone number if you'd like, too, so you have another resource.

    caregiving. family. advocacy.

  6. Hi Trish:

    Thank you so much for your support. I am so blessed to call you friend. You have been so kind to me and I am so grateful for that.

    I know that I have to get thicker skin when it comes to people/family judging my decisions. I will definitely be getting POA as I know this is the best. I didn't know that SSI doesn't acknowledge POA so I thank you for that tidbit. I am currently Nicole's Representative Payee and I am assuming that this is due to her being a minor. What process did you have to go through to get this for Robert. My goal is to keep all the control I have now when she turns 18 until she either tells me she can take over or until I feel she is ready to take on the responsibility. I have to stop worrying about what others think. I am too overprotective etc.

    I welcome your phone number. I don't call friends very often just because of time restraints but I am always available for friends calling me which is usually the way it works.

    Jane ~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
    "If you don't like something, change it, if you can't change it, change the way you think about it."