To all the caregivers of loved ones trying to get through each day with some kind of normalcy as I have been a cargiver for my wife for the last 20 years...my does time fly. She is approaching the mid to late stages of the disease and we have gone through many trying times and as the care giver you have to realize its the disease. Looking to here from others to share this ride of anxiety and sometimes depression.

care giver...you are something to be doing this for 20 years, I think I have been doing it for about 10 years but only diagnosed 3 years ago.

My HD hubby is a pill, angry ALL THE TIME, hard to get along with and now his sons are moving to the area and are causing trouble.

The don't want to know or learn about HD they just want to visit with dad, the only problem with that is dad tells stories so far fetched that the

kids believe him, now they are talking him into kicking me out so they can care for him. He won't talk to me because I won't let the kids into

my home unless they straighten up and learn about how to treat an HD person. I wish people on this forum told what really happens to the

HD person, things the care giver really goes through so we can learn from them. I know not all are the same but they are similar.

God Bless you Sir.

Marlyssa.

Have you obtained any of the literature from HDSA on HD facts and how to deal with them. The information is out there and if you can't make them go get the info, get it for them. I wish for you that they could understand the toll this is taking on you, and that you need their support, not their criticism. The only way they will understand is if they learn.

Is there an HDSA social worker in your area.

Can you lead them to the forum, or put them in touch with an HD support group.

Are they his natural-born children? Do they understand their risk? Their behaviors might be a degree of their own denial of what may come.

I hope you are able to find some support.
Patty

My hat is off to all of you caregivers. Break it down and maybe it should read care-sacrificers or something like that. From my time on the forum you all give so much of yourselves and that is an attribute many do not possess. I don't "know" you but "thank" you.

Mike

I applaud all the caregivers and am thankful we have this site to throw it all out there ad share our journeys. I don't think I have ever posted something that was unheard of on this site. every angle of this wretched disease is hard, from the patients to the caregivers, the doctors and the at risks. My husband has gone through some drastic changes with some changes in medications. We were having some trouble figuring out what the disease is causing and what the meds were causing. I am thankful for the most recent drug regimen my husband has been on. The angry outbursts and rants seem to leveled out and now he seems more vulnerable.

I fee for you, Marlyssa, your entire marriage has been consumed with this and I know it would have been far easier on you to have given up and run away. My first thoughts about your current situation were to get a place of your own and allow his children to be a bigger part of the picture. They will eventually see what you see and be forced to learn what you have learned. I realize this may be unrealistic but would give each of you, including your spouse a different perspective of what is really going on. I'm not talking about leaving him forever, just a vacation to give his children a chance to shine, perhaps-or fail, who knows... We all need a chance to come up for air and you really don't seem to have gotten that opportunity and now they are all ganging up on you. I think if you guys could have a conversation about what kind of help you need, rather than just what you "aren't doing" for him or what "they can't" do for him, maybe you could become more of a team where everyone is a part of the solution in some way, it would be far better for everyone involved.

Vicky