I have not been on here since Nov 5th, last month...thought things were going ok then shit hit the fan this last 2 weeks. The only time we get along is when he is in a depression (weird right?)
He is now a awful person again, if I have to leave the house for what ever the reason it is like I am being timed, why did you take so long? who were you with? I bet you were doing...bla bla bla. If I don't come right back then he says I am not thinking about him.
He never wants to eat with me, if I ask him if he would like to eat he says no and then when I am away from the kitchen he goes in and fixes himself something to eat.
Right now I am in a constant state of frazzle, I just can't take this anymore, it is worse than I can put in words.
He now has nurses come to the house once a week and a PT 2 times a week, I won't even participate when they come because all he does is belittle me in front of them, how bad of a wife I am etc. etc. shows them if I havn't dusted etc.
I hear it gets worse, how can it? if it does I don't think I will make it, (I will make but I don't know how).

I am so sorry for what you are going through. I understand but only in a tiny way. The way you describe "the sky is blue, the sky isn't there" thing is just so right on. I wish I had some words of encouragement...maybe we could email and vent to each other. Sometimes venting is all you have to get you through. And it helps to have someone who understands that the person you are venting about is not rational and there is no way to anticipate anything. It makes it so hard to have a conversation, plan a day or anything.

Hugs to you.

I think one of the hardest things I go through is I have to hide or sneak to be open with my friends about just everyday life, I do not do anything wrong, I don't hurt him or our relationship in any way but he can take the smallest thing and enlarge it, then blow it out of context and then accuse me of doing what he has made up.

Today was an ok day, I just kept myself to myself, I am starting to get sick and I shared that with him, I have a slight fever and hurt all over...so of course he helped me out a bit but I know from the past when I get sick he gets sicker and causes me to stay sick too long because I will have to over do it to take care of him. I will let you know if and when this happens.
I think part of the reason I am getting sick is I have been waking up in a pool of sweat, I get up and find he has turned the heater up to 80, I turn it down and go back to bed and wake up the same way again, it will be at 80 again, and he has a radiator heater in his room as well as the house heater.

Here it is 2:30 in the morning and I am still awake, I have been doing this for a while now, I even take meds to help me sleep but I think I stay up because I get a little bit of me time while he sleeps. I can go on the computer without being questioned or anything else with out him questioning me and trying to make me feel guilty.

Well that is enough for today, God Bless all of you who read my stuff!!

home but just by listening now they would all come to the house and help but he dosent like visitors and its hard to figure out a time to get out but you have to just go and do something for yourself walking is a great stress reliever

WOW it has been almost a year since I have been on this forum, so many things have changed with my husbands HD, I have aged about 5 years in this one year, I hate this HD, no one tells you the reality of the disease ie: doctors, but as soon as you are living with it you learn how hush doctors really are.
Thanks to this forum and people I have met on fb I have learned so much about what I am living with.
I still and even more hate this HD !!
I am sorry for anyone who has HD and even more sorry for the people who have to or choose to live with a person with HD, I feel for the caregivers who like myself do everything they can to help the HD person still live a full life. I feel for the friends and family who ran away when we went to them for a shoulder.
I now have tears in my eyes everyday because of what this is doing to my husband and what it is doing to me. I may sound selfish but I am not, I am living a hard, terrible life with watching and dealing with someone with HD.
As my husbands doctor told me I have to get tough skinned, I was pissed when he told me that in front of my husband knowing he would use that against me somehow and he has and still is but it is true you as a caregiver have to be tough skinned to continue to live through HD
God Bless you all !!!!!!!!

I hear you Marylyssa! I am having similar difficulties with my wife. However, I don't have a diagnosis as of yet!!! I witness the same symptoms all the time. Paranoia, accusations, misinterpreted events, communication
problems, movement

disorder, etc. What a life! I wish you the best and know that I GET what you are going through. Nobody else will get it. You are the one who is appearing UNWELL as my GP puts it. He is so right! I sometimes stop telling my stories for fear that people will think that I have lost the
plot. Sometimes family, friends, people don't get it. They begin to worry about YOU and question your sanity. THAT IS SOOO DIFFICULT. Hang in there. Be strong. Be brave. Be fearless. Thinking of you and feeling your pain.

I hear you girl. My husband was diagnosed in July of this year. I too hate this dang gene and what it does to marriages and families. I am glad to see you are hanging in after a full year. My situation has not gotten as bad as yours, but I too am tired of trying to figure out how to toughen up. Just not wired that way, not really sure anyone should be wired that way. Just to turn off your feelings. I am just so devastated at how this has turned a 22 year marriage into what it has become. My spouse just decided to move my bedroom furniture out of our room and gave some pieces away to one of the kids, then moved in a set of furniture that was in a guest room into our room. (Never mind I do not care for it at all) All without even talking to me about it at all. So now I have 2 rooms with mismatched furniture. I'm not so upset about the actual furniture, even though it probably sounds like I am, it's more that we aren't even able to talk about things that married couples should be able to discuss. This is just one example of many that if I say anything, then I am selfish and only thinking about myself. Well, yeah, it's our bedroom furniture. He's just thrilled with himself and once again, I just get to shut up and deal! This sucker is a real self esteem killer on the spouses and I am still trying to wrap my head around the reality of it all.
Vicky

Vicky

Hi Marlyssa,I love the word DAILY ,it is ,it is daily and it hurts ,and its sad ,and its exhausting,and its scarey
every single day.
I went to a Doc the other day and asked for anti-depressants ,told him Iam tired ,been a long life.
That was about as nice as i could say it ,cause yah they do they start questioning our sanity its true.
Hi can you be my doctor .The old me is in there ,not sure where ,but trust me ,im having a good day today
dont worry that i look like a skid row bum,dont worry that i look like i want to jump across the room at you ,when
you tell me ,I know its hard ,but you need to take care of you too,lol ,can you take a holiday .OMG ,it always crackes me up
HD does not allow for holidays.
Tonight when i saw hubby he sneezed and yah boogers everywhere ,i quickly wiped them up and said ewww
no kisses for you booger face ,he laughed so hard .
The tears fall onto my cheeks as i feed him his purreed peaches ,cause last few weeks he is coughing after meals
to much so i changed him to puree tonight.
But just another hurdle my emotions will yet again asborb.
I think the one thing that i wonder ,after our journey ends ,will we ever talk about it again ,like a silent movie playing
everyday in my mind when i look back.
Been a long day ,work in the morning ,when i read some of the posts here it helps me so much,I can so relate
But wouldnt trade him for anything.
Some times just a hug can be way better then any drugs out there lol. take care

Vicky, I can totally relate to your furniture story. I actually moved out for a few weeks when my husband started re-arranging all the furniture to accommodate a room for his full sized ping pong table, which by the way, he only used a few times. He moved all the family room furniture and TV to our living room which was half the size. Then moved our piano out to the garage, it's ruined now due to the 100+ degree weather we get from May thru September. Then he took down all our pictures, and hung a bicycle on the wall in our new, extra small living room, and another bicycle in the family room with the ping pong table. It was in there for several months until finally he got tired of our hot (west facing) living room and moved everything back the way it was (except for the piano - still in the garage). That is still painful when I think about it.
Then he decided the king sized bed in our master bedroom was too big and insisted we buy a full sized bed for said room. Of course there was no way I was going to fit in it with him so the master bedroom became his bedroom and I had to put our expensive king sized bed in another room that became my bedroom. The bed (no headboard) is way too big, and even up against the wall there is only a foot or two space around much of the bed.
Much of what he does makes no sense to me what-so-ever, but to keep the peace I just go with the flow, as long as it does not cost a lot of money. We don't have visitors very often and my family knows what he's like. Someday I will be able to fix or undo a lot of what's he has changed, so I just try to be patient. I definitely don't love him the way I used to, I feel very sorry and guilty about that. But for my own sanity I had to let that part of the relationship go. Hang in there everyone!! You are allways on my mind and in my prayers. We will survive.

Okay Donna-guess I better just count my lucky stars I don't have a bike on my wall...yet. Okay you really helped me gain a better perspective! I haven't laughed so hard in a long time, reading your post. I think we might be married to the same man!!? Thank you for that. Mine did move the downstairs furniture all around, but says WE can move it back when we take the Christmas tree down if WE want... but also said he was going to get a baby grand to replace our perfectly wonderful upright piano (he plays, I don't) and then he's going to turn that room into a music studio for the songs he is writing. Once again I can't come up with anything unusual here-haven't had anything happen so far that someone hasnt already walked. That's why I am here guys!
Thanks again for sharing, the good , bad and the ugly!!!
Vicky

Vicky



Edited 1 time(s). Last edit at 12/09/2013 10:17AM by VRE.

Oh shit it has been a long week, I had to go to another town 70 miles away to have a procedure done and I had to stay for 2 days in a hotel by myself, wow you would think I would like that. Well anyone my age knows you have to drink a gallon of puke liquid and sit on the toilet for hours then go to a strange place get put to sleep and wake up groggy and in some discomfort from this procedure..

Everytime I called my hubby to see how he was doing he would fight with me, what? I'm in discomfort. After sleeping on and off for several hours to wear off the effects of what I just went through I was a bit hungry so I drove just across the street (it was raining) got sone take out and went back to the room. After trying to eat I called my hubby to let him know how I was doing...why I don't know but what happned next I didn't expect. He called me names, said I was selfish for not bringing him something home for him to eat, I told him I was not ready to drive the 70 miles home yet and that it was already 8 pm and dark, that I shouldn't have driven even across the street, I was still groggy. Wow did I get a quick ear full of all that is wrong with me and HE hung up on me. I called him back and he said he didn't want to talk to me and hung up again.
I slept until 1 am and got up , checked out of the hotel and drove home, at one point I was only doing 60 on the freeway because I was still groggy. I called him as I got off the freeway but no answer, I called him again as I was getting out of the car so he could unlock the door for me, as I was walking towards the house hearing the phone ringing, the door was slightly open and he was on the computer next to the ringing phone.
Again why didn't I expect this...he then accused me of sneeking in on him, I said I had been calling that he would know I was coming home if he answered the phone. He said he didn't want to talk to someone like me and for the next hour mumbled bad stuff about me. Got up the next morning to see him up and he said " HI HONEY, how are you this morning?" Mr sweet and happy was back.

My body is feeling real depleted and low, still don't want food or liquid and I feel like I am getting a good cold... texting with my adult daughter tonight I texted something that made me laugh and laugh and laugh..now I have the giggles. Went to bed and watched a show about what dumb things people do and I laughed so hard the tears ran all over my face, it felt good I have not laughed like that in along time.
Then got up and read the 2 messages above this one and started laughing again. I am not laughing at anyone but the Twlight zone that other people go through that is so much like what I go through with my HD hubby...tonight just made me laugh!!!!

Thank you so much everyone who responds to my Twlight Zone HD world. Thanks for the "I can feel your pain" Thanks for the good laugh (giggles) I got, I feel I can make it through another day now!!

God Bless you all
Marlyssa

Hang in there Marlyssa. My husband has good and bad days too. I can't believe some of the stuff that comes out of his mouth sometimes. I have to take a step back and mentally put my fingers in my ears and say lalalalalala, I don't hear rrrrr you.
He often doesn't remember what he says to me the next day, or even the next hour. In fact lately it's getting worse. He will have just had lunch and later on he will ask me "did I eat lunch today?". Yesterday he forgot to take his meds in the morning and at bedtime wanted to take the whole day's worth of meds at once. It took a great deal of convincing that he should not take the double dose. Jeepers, I didn't want him to OD in his sleep.
I'm so sorry that you are feeling poorly, it stinks when you feel yucky and the one person you want to understand and coddle you, is only interested in having their needs met. Sadly, this will not get better. Know that we are here for you and totally get what you're going through. What you can't change, you must laugh at, because crying only makes your eyes puffy and head ache.
Donna

I live in a area no counselling, my husband has HD he is 52 we have been married almost 25 years, he has always had anger outburst, I never know , but of late worse , he is on 12.5 once a day Tetrabenazine , anger is worse , movenment no better but he want to keep taking , this new medication we started in Dec 2012 , just now he yelled in my face for saying wrong thing, he is only on celexa 10mg , any happy pills out there that work

I waited a few weeks to share this with everyone here because I was so angry I did not know how to say what I felt with out sounding like a mad woman.

My HD hubby was without some of his meds because his family doc I think forgot to send for them so without his meds he became a zombie, then his xenazine (spelling?) was 3 days late so not just a zombie but a lifeless zombie. He would need to use the toilet and I would have to carry him to the toilet and stand there with him so he didn't fall over on his head, he would tell me to get him a smoke and knowing he was not able to handle a smoke I would say NO so he would yell at me until I lit him one. I would watch him attempt to smoke but so out of it he would just drop the cig and fall asleep. For 24 hours this went on and I was very tired so while he was sleeping I went into my room and started to take a nap, it had not even been 30 min and I was startled by the smoke alarm, I ran into his room and he wasn't there but the room was full of smoke I then saw him come out of his bathroom where he lit a cig while on the toilet dropped it on his oxygen tubes and it burnt through and blew up.
Everything was somewhat ok, he only burnt his ankle and arms a little, a fresh 12 pk of t-paper was burnt and the towell he had on the floor was burnt. He had grabbed a glass of water to put out the fire and turned his oxygen off just in time, I was surprised he could even think to do that.
I ran through the house opening windows and doors, turning on fans to run the smoke out of the house. He had a doc appt that day anyway so when we went his doc had me take him to the ER for smoke inhalation, the ER doc said he needed to stay over night and he threw a fit and they discharged him.
The best I could get out of him is that he promisses never to smoke in the bathroom again...2 weeks later while a friend was over I went to check on him and he was smoking in his bathroom again with the oxygen tubes in the exact same place as before.
I just don't know how to let him out of my sight, I only get 1 hr of respite a week and I do need to sleep sometime and I really don't want to burn up in my sleep but I guess I just have to give this to God and let him be in control. AND ya know what really hurt me?...we have the same family doc and she never even was concerned about me, didn't even ask me if I was ok. This HD is killing ME !!

Marlyssa, you are dealing with a very difficult situation. Just wanted you to know that many of us here are thinking of you and hope you remain strong. We all have our days. My wife is in the latter part of mid-stage and, I guess by definition, she is just shy of late stage HD. It isn't easy.

For perspective, I marvel and sympathize with my mother, who is 82. She is at home, taking care of my dad who is 83 with Alzheimer's. They still live in the same home I grew up, going back 50 years. Her struggles in taking care of my dad are similar to mine, in taking care of my wife, 51. Soon he will need to go to an assisted living arrangement as this is taxing her too much and robbing her of her remaining good years. But, she loves my dad.

I only share this as it is important to know that we aren't the only ones bearing a cross. Nearly everybody has some difficulty and adversity in life, and as many have shared in this thread, we are empowered to perceive and react as we see fit. That seems like little solace on the surface, but attitude and perspective are mighty powerful things. Best wishes to you.

Tyler,
when you say your wife is in the later mid stages, what exactly is she doing? my husband was diagnosed in Aug. of this year. The dr said he from what he could tell from the MRI and the way Donnie was acting, he was well into the middle stages....I was just wondering what I could compare him too.....his symptoms are and have always been so mental....he has terrible outburst of anger, he is selfish and self-centered. very moody, accusing me of everything, paranoid, ir-rational. has a lot of trouble with his balance and coordination . repeats himself over and over. very clumsy.
I am sorry for what you are going thru, cause I know exactly how you feel
Liz

I have not written in here in a while because there has been too much going on...from my HD hubby catching the bathroom on fire by dropping his smoke onto his oxygen tube, to one of his adult sons (wife and 2 - 3 yr olds) moving into my house. My step son doesn't understand HD and that makes it difficult for me, he just wants his dad to be happy, that is all well and good and I am proud of him caring for his dad that way but he is not interested in learning how to take care of a HD person. The step son gets angry at me when he doesn't hear what my hubby says to me but hears what I say to him and thinks I am treating him wrong. The step son and I had a conversation last week and he told me that over his dead body will his dad ever end up in a nursing hom, he thinks his HD dad is the same as his aged grandmother that lives at home with help. I feel threatened and mh hubby uses us against each other, I am always wrong and the son is always right, I can't have a conversation with my hubby about anything anymore he will yell what I said if it is confidential so that his son knows what I am saying. In a week or 2 another one of his sons and family will be visiting bringing another 2 kids of the first sons who live her, the kids will be here for 2 weeks, I have no place for them to stay but I guess that is life for me because I get to be happy they are here to see him. I don't want to sound mean I love all the kids but if any of them knew MY frustration they would visit with out so much impact and also with the understanding that I am not out to hure their dad even if he doen not tell them the truth and badmouths me. He makes up stories and tells them and they believe him, drives me crazy.