My husband was just diagnosed with HD a month ago, the doctors think he may have had it for around 8 years tho.
We have only been married 12 years and the first few years of the marriage was horrible, he was so mean, calling me awful things and doing unexpected things. As I read about other peoples experiences with a loved one with HD I can now see he may have had HD before we were even married.
My hubby "K" does have the leg, arm, hand shakes, he walkes with a cane because he has back problems and for the HD about to go to a walker, he is more passive now then he used to be, we have a lot of trouble communicating not because he has a problem speaking but because his sentences are not clear in thought or not finished and he gets very angry at me for not understanding him, that I should know what he means or is thinking.
K has been on oxygen now for several months with copd, he still smokes but I have to watch him very carefully with his smokes because he falls asleep and droppes them, burns on the couch, car seats, bathroom rug 2 feet away from his oxygen bottles, ashes every place, I think it is such a habbit to hold a cig that he forgets he has it and just lets the ashes fall. The doc has told me to not make him quit, that smoking makes him happy.
K has a lot of fears, he refuses to be social, doesn't like crowds, won't even go to a theatre, I have not allowed anyone at my home for years now because he would do strange things like stand around the corner and listen to us and later use conversations against me, same as when I would be on the phone he would think I was being unfaithful or talking about him. He doesn't think any of this has ever happned.
Since he just found out he has HD he has gone into a depression, thinking he has killed his kids and grand kids, we have talked about it, he says he doesn't think that way anymore but I still hear him saying things about them.
As of last week I have found him scolding himself about not doing the dishes, as if I had scolded him but I did not, and he gets up about 1 am and stays up until about 4 or 5 am so I have to be up with him for safety reasons and I am getting sleep deprived. He just got out of bed today at 11:00 am, not talking to me when I say good morning. Now after 1/2 hour of being awake he comes over to me to get a smoke and says HI.
I am so new to this being a disease and not just a mean man so I will write as much as possible daily because after a lot of research I can't find anyplace where anyone who is a caregiver tells about the daily changes in the person with HD, the docs have been quit vague. I have read about some of the things caregivers have gone thru and it frightens me, anyone who wants to participate with me on daily activities or actions of HD then please Please chime in!!!! and please be nice about my spelling!!
Thanks
Marlyssa

Welcome.

Welcome! I also thought my son's dad was mean and sometimes I thought he was just plain evil. Then I found out about the HD. I still think he is mean and wants to hurt my feelings and I get mad. Then I back off those feelings a little because I remember that he can't help it. It has taken some time to get over the anger and the feelings of betrayal. I will keep you in my prayers.

Welcome Marlyssa,

I agree that the docs don't say much about the daily life changes, probably because they don't know. They know but they don't live with HD so they really could only relate what they have been told by caregivers or Phds.
I think the psych issues are the cause of most of the hardships experienced by caregivers. Never knowing what or who will set them off, paranoia, changes in cognition, an unawareness of their condition...the list goes on and it changes as the Phd progresses through the disease. Everyone is different in the way and time frame that they experience the effects of progression. That's what makes it so hard.
Try to do some nice things for yourself, it will give you the endurance you need for the long haul.

Take care,

Carla

Welcome! Your experiences sound all too familiar! I'm sorry that you, your husband and family are having to go through this. There are no easy answers, just a lot of patience. It's definitely not easy, and I remember how challenging it was when Ray was home with smoking. I was always afraid he was going to burn the house down. Try to seek help from family members, friends, etc., because you need a break and sleep, if you want to be your best to help your husband and take care of your family. Caregiver burnout is a big issue! Did the doctor put your husband on any medications?

I feel so much relief to have so many people respond to me, thank you all for being there for me!! My husband will start a medication soon for the shaking, we are just waiting for it to arrive. I know I need to take breaks but my hubby doesn't think I need to go anyplace with out him, he won't go and see the grandkids or anyplace unless I go, I try to tell him there are places he can go with out me like to stay with his adult kids but he will not go unless I go, this is too much pressure for me.

How do I back off of the meanness, I guess it is HD and sometimes I say to myself why would MY HUSBAND, the one who is suppose to love ME be so cruel? The blaten lies? Sometimes I can back off and just say he is a child and I have to treat him like a child but on the other hand he still does all our finances and still does them well.Anyone who has gone thru this please help me to understand!
Thanks
Marlyssa

I am starting to get nervous again, I can be on the computer and he comes out and if he sees me click the mouse then he says "wow you got out of that fast" as if I was doing something I didn't want him to see, I am so tired of being accused of wrongdoing. ALSO. I have no family around, just him and I, we are considering moving close to my family, his family thinks I am full of bull when I tell them what is going on. I don't know if we should move soon before he changes his mind or wait a couple years to really build up the finances? If anyone who has been thru this can please give me advice. Thanks Marlyssa

hey marlyssa
dealing with HD is so hard on the caregiver but to be without family is many times worst . personally if he agrees to mover i would, only because in my situation my husband( diagnosed in 2005 and i think started in 2001) will agree than change his mind and then the yelling would begin and would be all my fault and the language so bad . i completely unsterstand about the meaness . i dont know how to tell you a way for it not to effect you because i havent figured it out after all these years.in the beginning i would do a lot of reading now not so much anymore not much interest. advice people give me is just try to remeber its not him its the disease but after so many years its hard to tell. we were married in 1990 even tho he didnt have symptons he let the disease destroy him and our family . he felt guilty everyday thinking his children(21and 14) would get HD that he never let himself have a relationship with them they saw and heard a lot in their life and grew up to fast . today we all live in the same house but they dont talk to him its very stressful because the younger one cant understand why i do so much for him she never new him any other way but mean .i love him but just as a person ive known for many years . i have a great family to help me not at 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 . i have a great counselor and meds help me so much . im sorry i went on and on again but just typing out your thoughts help so much

wow Jen thank you so much for showing me my feelings and the things he is going thru are not just in my mind but they are real. Keep your head up as well.

I let my hubby go to the store in the car today by himself, that will not happen again. He came back ok but complained how tired he was and that he felt lost in the store. I gave him a small list of things to purchase and he said he lost the list, he also said he felt sick to his stomach, don't know if it was the heat outside or the challenge for him?

Keep an eye on those finances. I also had Joe (my ex) continue to do the finances so he was so good at it,( I also didn't want to take it away from him, as HD was already taking so much) then I found an electric bill that was 3 months behine and discovered our mortgage was a month behind. I had to get tough with him and just take it, call my parenets for a $2,000 loan to get things caught up. It was a very scarey time. I also had to refinance the house somthing, I was NOT used to taking charge of. Pat

Pat thanks for the advice, don't know when to take it away from him, now or soon,not sure so maybe I should start slow and we just do it together for now. I hope you have everything in order now.

PLEASE...I need some serious responces to this...As I have said I think we should move closer to family, where we live now there is no family in our state at all. We moved here because it is warm and dry, where we would move is Mississippi and that is not warm and dry. To move would be selling our house or renting it out and it would take a lot to move because I owned a store a couple years ago and when I closed everything went into storage or the garage. I have Fibro and back problems he has HD and back problems, no one here to help.
The town we live in just got it's 2nd stop light a couple years ago when we got a Walmart and at almost any time of the day you can see all the way up and down the town and only see a few cars, I am saying this because there is absolutely no one here for ME. Is that selfish?

I have talked to my hubby and he has agreed to move in 6 mo. to a year, then a couple days ago he started bringing up that he didn't want to move and some legitament reasons ie: he knows this house with his eyes closed, he feels comfortable here, this is his home.

For us to use our assistance (medical VA) we have to drive about 270 miles each way and he cant sit that long in the car, this is one reason I want to move...

I have been suffering depression, since I closed my store I stay at home with him every day 24/7, I have no friends over and I do not go anyplace except the grocery store, he has said I don't need anyone but him. I have taken a trip now and then for a big event for my sanity also.

I have been unable to keep any local friends because now as I see it , it must be the HD moods of his causes people not to want to come by and before I knew it was HD he would make me feel bad when people were over with his sneeking to listen and then scolding me later from something simple I may have said in my conversation with a friend.

What do I do? do I agree to stay here alone with him or do I force the issue now before he gets settled on staying, and just make the move? I have an old power of attorney from a few years ago but don't know how much I can do with that to make him move and I do not want to force him anyway.

From everything I have read I know what is ahead and I am afraid for him but also I am afraid for myself !!!!

I do understand what you are going thru, since two years ago, we find out that my mother in law die from HD in 2000, and since then we were scared that my husband will get it, it happended so fast he start loosing weight and I ask him to go and see the doctor and of course he would not doing his shaking got so bad that his boss told him if he would not go to the doctor dont come back to work so he went and got tested and sure enought he was positive for HD as soon as he find out he start having very bad headaches for almost a year, he start thinking that we were against him that we were making noise and talking to neighbors about him it was horrible, like you said the doctor wont tell you what to expect and you just learning as the actitud change, I have three kids the young one is still at home and its hard for him to see his dad like that, but I tell him it is what it is and we need to deal with this the best that we can, he use to smoke thank God he doesnt anymore, he does not talk to much and he kind ignore us while we are in the same room with him, lately he just walk around inside the house I give him his medicine and he likes to go out to casinos, if I dont take him he get upset, he doesnt realize that we dont have money to spared and seriously I dont waste my time to explain him why we can go, he talks a lot to himself I try to explain the doctor how he is acting and he always tell me as long as he doesnt hurt himself or us everything its fine.
I moved my mother with me and she stay during the day with him while I go to work, sometimes I feel so tired and I cant not anything to help him
I just would like that someone will tell me what to do to make life a little easier for our family.

i would move back to mississiipi asap. your husband, im so sorry to say, is going to be angry either way at least this way when he gets angry and starts yelling at you , you can run to a family or friends house for a minute im sorry at this point you deserve a couple minutes of peace at a friends houes who cares if you force him just do it you need to stay strong your husband will rant and rave whereever you are you might as well be with family . in no way is it selfish for you to want to move back home do what makes you happy you need to be healthy to take care of your husband .im not an expert in anything but id be afraid if you stayed where there was no one to help you your depression will be worst .
will you have to sell the house before you leave ? is it possible to put the sale sign up after you leave or do you need the money to make the move?
i just dont get it my husband calls me to help him chat with someone on line(who knows i just dont care) . i go down start helping it seems normal for a second so i say im tired (my mistake because its about me) he replies (remember im helping him) wtf are tired from you do nothing so i quietly stood up put the computer on his lap and said you figure it out and here i am . omg its so tiring every minute is so different .
marylssa please dont try and do it on your own go back to family and dont be afraid to ask for help (i need to take my own advice)
your in my prayers

Jen you have given me sound advice, the every day not knowing what to expect is so true !! I guess what I need to do is just suck it up and make things happen!?!? Do I have the strength? I don't know but I guess I don't have a choice if I want to stay somewhat sane, I have to move to where there is a support group. Honestly I am very afraid, afraid of what will go on in his mind and he blames it on me, will I cave in from the pain he will give me or will I be strong and just keep saying put one foot in front of the other? I don't know! We bought some land next to our house and in 2 years it will be paid off, he said to wait until it is paid off to move so we will have collateral, I agree that would be smart but how will life be in 2 years, again I am afraid!

I really think that his not wanting to move is because of the thought of change causes uncertainty. I stopped listening to excuses and just went ahead and moved and it really was right. You have to do what is in the best interest of both of you. If you medical is so far away you have a definate reason to move closer to it. Also some support and maybe some daycare facilities are important to consider.
Just start the ball rolling the sooner the better.

My husband use to smoke to I guess the medication that he is taking make him mellow, but he was look said very mean and anything that you would do he gets mad I am still working and when someone from work call me for any reason he gets mad and start walking and start talking to himself, I use to ask him all the time to stop smoking he use to smoked a pack and half everyday he was having problems breading, with a lot praying from all my family and friends we are trying to be patient with him and one day he said I am not smoking anymore and he stop he is taking Xenazine 12.5 for the shaking it was really bad and evething he eat will give him diarria, I suggest his doctor about the Xenazine he has been taking for almost a year he got his weight back and does not shake at all.
he is not doing great but I am able to keep him home under my mom supervision I do feed him in the morning before I go to work, come home and have lunch with him and make him dinner every night, he could do everything by him self shower in the morning and dress himself I dont know how long is going to be like this I hope for a long time because I can not affort to stop working I still my youngest son home he is in high school, and trying to make it as normal as I can.
I understand that he does not want to go anywhere without you same here I think they feel secure with us, but still you need sometime for yourself even couple hours a day my stress is going to work, do you have anyone that stay with him a couple hours a week so you can go and relax or go to the near mountain and scrim as load as you can trust me you will feel a lot better, give you energy to go back home, I will be praying for you guys every night god bless you and good luck to you.

Hey M, I too was in a location that was very isolated. We had not lived there long, and I found that friends were not stopping by, medical facilities were far away, as well as other support. My husband wanted me with him 24/7 and if I wasn't home, he would try to look for me which caused other complications. One day I felt as if I was going to lose my mind, even though I loved the area. I packed up the animals, husband and necessities and moved. I was lucky that my sister had a vacant home we moved into. We are now in the same town as family and old friends. It is much better...for me. We still have the other house, will deal with that later. It is wonderful to have family who are there to stay with him when I need to get out. Now I am looking at a more permanent solution and wanted to pass on some considerations you too might toss around if you decide to move. He won't be happy wherever you go and he won't be happy where you are. I think it is because as he loses his ability to remember it causes frustration and wanting to go back to what he used to be (know). Even where his sock drawer is....
When you look for a new place, think down the road for your husband. Consider a one level place, as well as accessibiliity to get in and out, & around inside. My hubby can no longer walk 10 feet without a walker, so we needed hallways for him to support himself and room for a walker to turn around. He can barely walk up 4 steps, so an apartment with an elevator and all level areas might be good. As he has gotten worse, we are now thinking he may need a power chair and will have to consider the space we need for it to be maneuvered. We also went to two separate bedrooms because he needed to get up 10 times in the night and also moves too much in bed. I wasn't able to sleep--sleep deprivation made me very grumpy too.
There are so many things we learn as we go and what may work now, may not in the future. He complained all the time when we were in our isolated home, wanted to be back in the old area. But moving didn't make him happier. He now wants to go back. When we go back to stay awhile, he will want to be in a different location. Its the disease. You have to consider what is also in your best interest to survive in the long term. Family and friends that stick by you are the best!