hello my name is rachel and i am new to the message board. i have read alot of posts and i am extremly thankfull that there is a place where ppl like us can get support..i find it really hard to find suport because hd is a rare disease with little awarness and the loss of the ability to communicate makes it impossible sometimes to explain.
I am 30 years old , i was diagnosed at the age of 20 but had symptoms earlier and have a CAG of 49.my mother was diagnosed at the age of 18 and passed eight years ago. My sister who is now 35 also was diagnosed at 20 and had lived with me for the past seven years untill she entered the nursing home. I had many family member who had hd and JHD.
I have a daughter who is 9 yrs old and married her father when i was pregant. i was diagnosed when my daughter was a baby and after going through coucelling with her father for a year he left two mths after my diagnosis. He has never been part of my daughters life and i have had no little support my mom's family mostly passed away fr hd or didnt care and my dad is still a drug addict and has never been a part of my life so i have no family..as for my daughter's fathers family..her grandparents have been my only support and love my daughter very much but dont seem to want to discuss my hd.
i have always wanted to provide my daughter with the happiest and healthiest ubringing i can for as long as i can..but for the past few years it has become more and more difficult as my symptoms progress. I have now come to the point in this disease that i have been dreading for years..i can no longer hide this disease from her and i can no longer take care of her full time..i know she knows although i have only told her that i have hd and that it is a brain disease and i take medicne that helps. she has made comments to me like she notices my speech,balance,involentary movements. this is where my dilema with no support comes in..because i think if she is asking and notices these things i should tell her some of what is going on because i dont want her to feel like it is in anyway her fault this is heart renching for me she is my world. i have always known that when this time came that i never wanted to put my daughter in the possition of taking care of me as i did for my mother..she needs to concentrate on being a child being happy and making friends not seeing her mom deteriorate on a daily basis.
its going to rip my heart out but i am hoping i will find comfort in knowing i am doing the right thing
She is very close with her grandparents(her dad's mom and dad) and i will be speaking to them about this this week and working out some arragements.. but i worry because they seem very reluctant to talk about anything that has to do with hd and although i am going to set up councelling for her now i wonder how supportive they will be for my daughter if they feel this way about HD?
i would appretiate any advice from in my opinion the experts regaring this..people who have went through it

Oh dear.Your dilemma is natural and you are trying to put your daughter first as you obviously love her very much.Her grandparents are probably trying to bury their head in the sand regarding HD,which is probably easy to do coming from the non HD side of the family.However they do love their grand daughter which is common ground.I think you should express your concerns about caring for your daughter as time goes on and you don't want her as a full time carer.Explain you wish to do this now whilst you are able to communicate and maybe they could have her one or two nights a week to start off with and give everyone time to adjust.Do they keep in touch with their son/her dad? I understand your resentfulness to her father but maybe his parents should tell him the situation now and hopefully he will grow a pair and step up!!But he may not,which probably adds to his parents guilt to.I hope someone will come along and offer you better advice.I just wanted to say welcome and offer support.xx

I'm really sorry for your situation. You've done a very good job of explaining to us. How about you write to your daughters grandparents & explain to them how you feel, as you have to us here. Include HD information that they can read & learn from. Explain to them that this is very, very important to you & your daughter. Especially your daughter. Ask them to take notice for her sake.
Most people who haven't experienced HD have no idea just what it is & so it's probably easy for them to turn a deaf ear at the moment.

If you have no luck with them, what about social services? Can they help? If you're from England, SS prefer to keep children within their families so maybe they will speak to the grandparents on your behalf.

I really hope you manage to sort this without too many obstacles. You are obviously a very loving & caring mum.

Rachel,
I'm also so sorry for what you're going through. The love and care you have for your daughter is so evident!! You really did explain everything so well, so if you could sit down with your daughter's grandparents and explain, maybe it would help them to better understand. Is there an HD social worker where you live that you could get in touch with?

I wish you and your daughter all the best! I hope you can figure out an arrangement with her grandparents that will work for all of you. I think you'll find a lot of great advice and support here as you work through all of this!
Take care,
Michelle

My heart goes out to you. I can't imagine what you are going thru. I'm sure that since her grandparents love her, they will step up!
Best of luck!

Rachel,

Could it be possible to have Social Services intervene, maybe to help you hire someone like a nanny to come in and help care for not only your daughter, but you as well?

I don't know if there is anything out there like that, but it could help you keep your daughter with you and offer some support for you as well.

Welcome to the forum, I'll be keeping you and your baby in my thoughts and prayers.

Take care,

Carla

WOW. I agree with the others here. You have done a fantastic job of relaying your fears and concerns here to total strangers. Granted, we have an advantage over your parents-in-law: we understand where you are coming from. I would hope, for your daughter's sake and well being, that they would stand up and take notice of not only HD, but your daughter's future. I can't imagine the courage it's taking for you to try and sort this all out, but you are so wise to do this while you're still able.

Rachel,

I think you have done the right thing by making sure that your daughter is in the care of her grandparents. I understand why you think that they should be more sympathetic about HD, but I don't see that as an extreme drawback. They will love her and they will do what's right when the time is right. This isn't easy for the "normal" people to deal with or talk about. Acceptance and action is a process, not an "on" switch, even for people that are directly affected.

As for anyone suggesting any "governmental" services, I strongly oppose that. The government won't help, they will interfere only. It is my opinion that they will do what is right for the government, not what is right for your daughter. Do not involve any governmental agency in your life unless it is absolutely necessary in order to get you the care you need.

This my advice, based on dealing with "agencies" for years. Avoid them as long as you can. They do only what they think is right. You may not agree with the outcome, and you will not be able to change it once it is in place.



Edited 1 time(s). Last edit at 11/16/2010 10:07PM by Fred.

Welcome Rachel and thank you for sharing your story.

It sounds like your daughter's grandparents have the love necessary to step up to the mark and help care for your daughter, even if they aren't willing or able to tackle the issue of HD head on. Hopefully they will become more open to discussing HD as their involvement with your daughter and therefore yourself increases.

Print out what you've written here and let the grandparents read it. You've expressed your love, fears and concerns perfectly. Best of luck with everything.

i went through the same too and it very hard...i let my kids go live my parents too..my parents and I sit down and talked to them together..And i have been diagnosed in june 2010. my kids are 11 @ 15 and i see them and talk to me everynight..and my ex husband is just like yours...and she forgives you, and loves you too..You need to pray girl!!that's is what I do when i feel like broken and in dispair...God will bring peace to you!!!!

god bless you