I had briefly mentioned in a previous post about applying to the "dream foundation" to get a wish granted for Donnie. at first I was told that he didn't qualify because he was not at the "12 month time frame for traveling" according to their policy.
When we went back to the Dr. I explained this to him what they said and he said he would fill out any papers that they would send him to explain to them that Donnie would not be able to make this trip after a year.
So I call the dream foundation and they re-opened his application.
He was then approved but....... since we live on the East coast, we would have to choose a dream on the East coast because they were concerned of the travel time it would take to get to the Grand Canyon.....I tried to explain this to Donnie and he said "but that is the only place that I wanted to go" .....so all you caregivers know how we must fight and advocate for our loved ones, so I have spent the past 2 weeks on the phone asking them to make an exception and yesterday they called and APPROVED HIS DREAM to go to the Grand Canyon. I couldn't wait to get home to tell him. He seemed happy.
We are gonna try to go in November because I feel like we need to do it a.s.a.p. because the past 2 weeks Donnie has went down-hill so fast mentally.
The past 2 days he has also been very agitated.

Liz

Liz, I sent you a private message prior to reading this post about Donnie being approved to go to the Grand Canyon--Congratulations! That is fantastic!

If there's any chance you'll be coming through Phoenix, I would love for you and Donnie to come to our house for a visit.

We'll discuss later, but I'm so glad for your success with the Dream Foundation and giving Donnie such a great gift!

Thank you Sharon.
It was so good to hear from you. I've been worried.
We are so excited for our trip. I will send you a PM to answer your other questions you ask.
I hope we can meet up while we are there.

Liz

Well it's official, we will be leaving Nashville, Tn on Thursday, Nov. 5 th, going to the Grand Canyon. I am so excited but also so nervous.
We live in a very small town and everyone here knows us and Donnie's condition, It scares me to death to take him out of "our comfort zone"
I am so afraid people will mistake his condition for something else and give us a hard time.
My 3 sons will be there to help us but still I am very nervous.
Donnie's dream coordinator has scheduled us to have a 3 hr jeep tour of the Grand Canyon and it will end at sunset. I really think Donnie will love this trip. He may/or may not remember it, but we will and we will treasure every moment.

Liz

Go and enjoy. I know getting out of your comfort zone isn't easy sometime. Try to enjoy and put aside your fears for now until you have a problem then you can work around it. Donnie will certainly enjoy some part of the trip as will you guys. Have a great time.

By the way. What is a dream coordinator

Mike

Hi Mikee,

there is a website called Dream Foundation. It's like a make-a-wish for adults. there office is in California. When you submit an application you are assigned a Dream coordinator and that person help to fulfill your dream and works out all the details.
They are a great organization .

and Thank you.. I will try to stop worrying but I am SO protective when it comes to Donnie.

Liz

Liz, saw here that you're worried how people will perceive your husband on the trip. When Don would be leaving Phoenix to
go back to California, I'd let the boarding agent at the gate know that his condition wasn't due to alcohol or drugs, but a serious
neurological condition and that he wouldn't bother anyone. I also would ask that the flight attendants be notified and requested
that someone at the other end help him to the baggage pickup area. Apparently they would comply as Don had no trouble on the
flight. You and the boys will be flying with Donnie, but you can still let the airline personnel know before you board the plane.

As for the other passengers, or sightseers on your trip, they'll be so busy with their families and travel plans that they won't be
concerned, so please don't worry, ok?

Sharon

Well we had an AWSOME trip!!!! Donnie had the best time. he did good on the airplane. he said it felt like he was riding a school bus. lol
We toured 3 different sides of the grand canyon, went to the hoover dam and did lots of other stuff.
Everyone was very sweet to Donnie.
I am so thankful that we got to take this trip. He might not always remember it, but we will.

That is GREAT news!

That is great to hear! Tell Donnie, from a neighbor, I'm glad he had a great time with his family.

Mikee

I just wanted to say HAPPY THANKSGIVING to all my extended HD family......
.I know sometimes we feel like we don't have much to be thankful for but we really do...
.I was reading over my post from this time last year and I was in such a very low depressed place in my life, but I am thankful that God has helped me make it thru another year....has it been easy? absolutely not, but I know that all of the time He's carried me thru it.
Thank you to anyone who has ever responded to my post and gave me words of encouragement.
I hope each one has a blessed, peaceful, Holiday.

Liz

So glad to hear your trip went good. You don't need to worry about Donnie ever not remembering the trip though, he will always remember it. HD is not like Alzheimer's, in that, in hd you don't lose your long term memory, only short term memory, so he will always remember this. Happy Thanksgiving to you too

Well another year has come.....2016....wow. I was just reading over my post from 2014 and 2015 at this time.
I can say that Donnie is in a much better place than we were in 2014 as far as his moods and ager issues go.
he is much worse physically and emotionally than he was in 2015.
He sleeps sooo much. I was home from work a few days over the Holidays and Donnie would sleep on an off all day in the recliner.
he also seems like everything he does is in major slow motion. It takes sooo much patience just getting thru a day with him.
I can ask him to do something as simple as change a lightbulb and he can't do it anymore.
also, I catch him lying to me....almost like a little kid. I can ask him if he did something and he will say no while I know the whole time that he did.
or I can ask him to do something and he will tell me he did, when I know that he didn't.

I didn't realize it had been so long since my last post.
I hope everyone had a great Christmas and New year.

I had mentioned on here that I not only use this post to get help from other people dealing with HD, I also use it as a journal type.
Donnie seems to be declining more and more every day. He can't remember how to do the simplist things anymore. ex. (putting an outlet cover back on an outlet or changing a lightbulb.
His moods are still ok. no sudden outburst but he hardly says anything anymore. I have to really pry him to even carry on some-what of a conversation with me.
It seems like he is withdrawing more and more everyday into his own world.
he don't remember people he used to know growning up if we see them out in town. and if they try to talk to him, he will just look at them.
We have this thing at church every year where we take 1 hr slots and go to the church to pray. at the end Donnie and I will usually sit on the alter and just talk and cry and I will ask him what he is thinking and what he is worring about, 3 yrs ago, was when he told me he wanted to go to the grand canyon. last year he said he didn't want to leave me and dalynn, and this year he just said "please take care of me and don't leave me" It is so emotional every year, but this year made me feel like he knew deep down that this was gonna be a bad year for him.
I know the worst is yet to come, I just pray everyday for the strength to make it thru another day.

LIz

(((hugs)))

Both of you, hang in there.

I am not in the place Donnie is. Yet I can understand; possibly from his perspective some of the things you describe.

Everything needs to be slower. In a setting with a lot of input, interpretation gets very difficult and you just want to withdraw.

This may not be the case for you guys but my opinion is two cents worth.

Good luck,
Mike

Thank you Barb and Mike.

and I disagree....your input is worth far more than 2 cents. You described it perfectly.....He is in super-slow motion all the time with everything he does. I try not to overload him so he won't get discouraged.
Some days are better than others as I am sure everyone on this site knows.
Any advice/input that anyone can give me is always appreciated.

Liz

eve Wrote:
-------------------------------------------------------
> Liz, you are not weak, you are wise. You have to
> take care of yourself and getting on some
> medication is worth a try. I'm on something and
> it didn't work overnight and it's not like a
> miracle happy pill, but it has taken the edge off
> my anxiety and depression. I urge you to give it
> some time and try it. I'm sorry for all you're
> going through. It really sucks and is really
> hard. Keep us posted. I'm sure a lot of people
> read your story and updates, but don't respond
> because it's difficult to know what to say. But
> likely there are many here who are praying for you
> and your family if that offers you any comfort.

thank you so much Eve

Liz

Liz, it won't make you feel much better to know that we are all going through tough times, but know that you are not alone. Some, more than others. You are dealing with some very intensive stuff, and it's like a baseball bat has been taken across your head. We all look to withstand challenges and survive another day.

Some days you don't think you can make it. I would not have typed it if I didn't experience the same feelings from time to time. Heck, I'm feeling that today. I know that someday I will miss my wife and would give anything to have another day with her, even if it was the way she is today. Today, she is not having a good day!

But hopefully you find some comfort in this note. By the way, I take Lexapro and have been taking it for a number of years. It takes the edge off pretty well. The best way for you to get through the day, after all the crying, is to make sure you are taking care of yourself with plenty of sleep, good diet, and exercise. So take care of yourself and you will be amazed at what you can do.

We'll be praying for you! Take care, Ty