Hi everyone,

First want to wish all of you a very Merry Christmas, my wish is that we all find one moment to cherish during this season.
With the help of my sister and brother-in-law and my husband and some awesome workers...we are building an addition onto our home so that I can bring Tim home and have the proper space and equipment that I need to take care of him. Most of you know the struggles of trying to care for or find care for our loved ones, it is mostly inadequate or non-existent ( and that is me being kind)!
I found my son in an unconscionable state at the latest NH he's in, I won't go into detail. At that moment, it became clear to me that the only one who gives a rat's ass about Tim is our family. I'm tired of doing HD 101 to people who could care less, or think they already know it all. So, long story short, we are all committed to making a safe and comfortable place for Tim and eventually Mike to live. We poured the foundation yesterday and expect to be ready for Tim by May or June. It is a surprise, he thinks we are adding on for his dad more garage space. I finally feel like the answer to my prayers has come, I know this is the right thing. We are flying by the seat of our pants financially but I feel sure that what we need, will come. I am at peace.
I thank God for a family who stand with us, I thank God for this place and all of you...may He bless all of our HD journeys and carry us when we cannot take another step.

Much love,

Carla

Carla;
This is exactly what I would like to do for Brent when it is needed. I will be anxcious to hear how your project works out. It is to bad that we can't get some help to get more home up to standard for our love ones.

Carla-
I don't post anymore because I really don't relate to recent postings. You have changed that! After 5 1/2 years of living at what was supposed to be one of the best HD nursing homes in the world, last April I removed my daughter Allison for the same reasons that you quote. The net result: She is now clean every day, gets her meds correctly and on time, is no longer incontinent, eats regularly and has gained weight, is safe from assault and happy. It is not easy, but seeing how she was treated at the nursing home was much harder. Any chance you can bring Tim home before the construction is done? Also, Tim should qualify for visits from a visiting nurse association. Your local county social services agency should be able to set you up with that. Best wishes, you are doing the right thing!
Howard

Congrats Carla! It is sad to realize that even though people go into the health care profession, some of them are there because of the money, not because of a higher calling. I hope everything goes well for you. And I hope that you will have peace of mind knowing that your sons are being cared for by the people that love them. Hugs!

Howard, so nice to hear from you! I'm glad things are better now for you and Allison. It's torture when you feel powerless and have to fight the system and fight HD.
When my husband and I were talking this thing out, I had become so distraught and ill from dealing with and worrying about what the next issue with the NH would be, I told him when he voiced his concern that being Tim's caregiver would be more than I could handle " All I need are the proper facilities to physically do the care, the rest I'm already doing! hell I am killing myself dealing with these NH's and I am paying them dearly to neglect and abuse our son" I also threw in a few F-bombs, but seriously I haven't felt this sure of anything in my life. I know this is the right thing.
I did think about bringing him home before it was completed, however, my house is not really set up to do his care. Also, I want to be able to devote myself entirely to this project. It will be finished, we hope, by May. That is also when our summer break ( I drive a school bus for special needs kids) starts so I will be able to get him in a good routine before I return to work in August. Right now he's all messed up, stays up all night sleeps all day. Believe me, now that we are moving on this, I am chomping at the bit to get him home!! Already have the foundation poured and will begin framing next week after Christmas. In the meantime, I go there 2 or 3 times a week and bring him here on weekends.
Thanks to all of you for the encouragement, I've told everyone I know that if you are not part of my solution, you are my problem and to please respect my decision. NO Negative Vibes!

Take care,

Carla

Carla-
I can so much relate to your experience. Allison was also staying up all night and sleeping all day at the NH. That does not lead to anything good. Proper nutrition certainly goes out the window. It certainly does make it easier for the staff who doesn't have to bother with her all day. Every time I complained, I was told that it was her right. I also heard that I wouldn't be capable of taking care of her. Well, it's been eight months and I'm none the worse for it! Interestingly, we were invited to a dinner that the nursing home puts on each fall to honor HD research. Considering that Allison was the only person at the home (out of 45 HD patients) who took part in clinical trials I feel that this invite was entirely appropriate. I suspect that we were invited out of curiosity, but to a person each staff member we encountered said how much better Allison now looks. Carla, please check into visiting nurses. Unlike the nurses at the nursing home, they work for YOU. They are in YOUR home, do as YOU wish, and YOU can change them if you are not happy. (For the most part we've been extremely pleased). You will not be charged for their services and they can spell you when you need to work or take a break. I'll be keeping in touch to see how you are making out. There are not too many parents here caring for their children, and you will be only the second one that I can remember who had the guts to make this move. It will work for all of you!
Howard

Caria,
I am so happy for you and your family. I have followed your post since coming to this site and my heart has broken for you and your boys. You said that it feels like an answer to prayer which I am sure it is. May God Bless you Big this Christmas Season and the new year.

Visiting nurses would be great, I know I will need some help but until we actually have Tim here, I'm not sure what kind of help. I was considering just someone to come maybe once a week and do some cleaning to start with. I'll have to get on the ball and check into what's available. My expectations are set low, so any assistance would be a nice surprise!

Howard, I'm sure I'll be looking to you for some ideas and guidance along the way! You're an awesome dad!

Debi, your post made me cry...cleansing tears! Thank you
Brents mom...I will eventually get this camera uploaded and post a link so you guys can see an answer to prayer unfold right before your eyes!
Fevre, thanks for your encouragement...I need to hear uplifting messages.

Take care,

Carla

Carla, I am so happy for you. We were so fortunate with what was available twenty years ago for my brother.
love,
Paula

I hope I will be able to provide care for my husband, God bless you.

Our project is moving along faster than I expected. We have had good weather and I have an awesome crew working on this. Blessings big and small keep coming our way, I feel sure that this is the answer I have sought for so long. Yesterday, the trusses came and the company that made them removed the delivery fee when they found out what we were doing. How nice is that? Today, a co-worker told me that she would be willing to provide respite care so that my husband and I could attend a wedding this summer in Portland. She used to work at a NH and she has a wonderful spirit about her. I will continue to post on our progress, can't wait to post that Tim is home!

Sending much love,

Carla

So glad to hear this good news! Keep us posted!