I can not even imagine where we'd be if the meds hadn't worked for Dave... I know how hard and lonely it is. But the outbursts are very much improved and I'm not sure if it's his meds or mine that do the trick, but I have felt less overwhelmed and I only occassionally have my crying jags and waves of dispair. Trying to just get really involved with HDSA and raising money and awareness has allowed me to see the whole truth about this home wrecker and I have seen and heard the worst if the worst. There are all kinds if scenerios worse than ours, and I try to remember that. Can't tell you how much I am praying for something to work in your favor!

thank you Vicky. It ALWAYS helps you read your post of encouragement. The dr. changed him back to the Zolaft and increased it to 200 mg. per day. It has helped with his mood but his ability to do anything is so off. he can't manage or do the simpilist things without me right beside him. It gets on my nerves sooo bad to have him constantly following me or just sitting watching me. anything that is done that a man should be handling, like figuring out how to fix something or make a decision that men usually make is ALL LEFT UP TO ME. I am sooo tired and stressed out from carrying this load. I have NO help. my son Dalynn avoids his dad as much as possible and his mom never comes around. she knows how bad he is but won't offer to help. if she or dalynn would just come get him and take him for the day and give me some peace that would help alot. I do not know how he is still managing to hold down his job. the only thing I can figure out is that he always has someone with him to tell him what to do.
we went camping this weekend and I literally had to do everything and make every decision. I just want Donnie to say " Liz, sit down and I'll do that for you. " or to just know to do it.
We were gonna put our camper in dry storage. It is a big field that you can leave your camper there so you don't have to drag it all the way back home. Well somehow he managed to finally get the camper hooked to the truck....I was following him as he pulled it into the lot. there were a couple of camper and then a big space of growed up grass ( litterally waist high) and then campers on the other side, and where do you suppose he decided to pull the camper into??? yes the grass!!!! he could not see how the ground was but decided to just do it anyway. well of course, he went off into a big ditch and the camper drug and he litterally drug all the plumbing and wires out from under it!!!! I just sit in the car not believing what he just done!!! well of course he said " I don't know what made me do that" I just wanted to SCREAM!!!! and I did some. I just drove off and left him with his mess and drove home. I cried all the way home cause he couldnt even do something so simple and also because I feel like such a horrible person for not having compassion and patience with him. I AM GOING CRAZY!!! I pray and pray for God to help me but I feel like He is nowhere to be found.
I'm sure I need to be on medication and to talk to a phyc. but I don't want to do that.
I feel like I have NO hope
I used to be such a happy person and now all I am is grumpy and I cry all the time
Also, in a previous post I had anounced that my son and his girl friend were gonna have a baby....well she is from Ohio and we are from Tennessee, She went back home for a couple of weeks to tie up som loose ends and go back to her baby dr. one more time. she left on a Monday and went to the dr on Thurs. and they could not find a heartbeat. they told her she lost the baby......I know its bad for me to say, but I'm wondering if there really were a baby? now after 3 weeks she is still up there and my son is still grieving over the loss of his baby. she says she's coming back but I don't know. in my opinion she is only using him to give her money. and this has put a big strain between us....something else for me to worry to death about.



Edited 1 time(s). Last edit at 06/03/2014 12:57PM by eteeftaller.

I know you "don't want to do that" but girl, you ate going crazy. The Donnie you knew is pretty much gone, you know that, he can't do the things he used to, you know that, he can not love you the way he used to or even really would want to, you feel that. Even when you see the glimpes of what you remember about him, they are becoming fleeting and less often. God is all around you and will give you what you need. You need to tell his mother, i need you, Donnie needs you. Even if it is 1 day a month, i need you. If you were to leave him, someone would have to help him. Daylin is another story, he may or may not have regrets about not seeing his Dad, but it really isn't his respondsibilty even though it would be so helpful, if he doesn't do it by choice, that's on him. Im telling you i don't know what I would do without meds! The big helpers on the front end have backed off now that things ate pretty much calmer, but I really wish they would understand that this is the best time to help him, while he is still able to get around. I still get a break, as I am still working and he is able to stay home. He also drives around town a bit, but Long distances for Drs and such I feel better about doing that as much as possible. They just changed Dave's Lexipro to Paxil to see if that would help with lethargy. Still praying for all of us, caregivers included. So very sorry about the loss of your grandchild. I know you were so excited about that. Even if you suspect it may have been a lie, it was a great sense if happiness and hope and I'm sorry you list that part. Just support him, it was real to him, regardless! You got this, you have figured it out to this point. Sell the dang camper, doesn't sound like that was any fun, and you can't handle all that entails! Wish you lived closer, i would make sure you got some breaks! Still praying for you, Donnie, the boys, a cure...

thank you Vicky, as usual, your "words of wisdom" help me soooo much. this life is such a MENTAL ROLLAR COASTER!! for the past few days we have been in such a good place emotionally and mood wise....I am dealing with the Donnie that loves me so much and cant do enough for me....he is constantly telling me how much he loves me and how he is so thankful to have me...which is bitter/sweet cause I know it won't last....and he has been sooo good to the boys... he even called them "his boys" the other night in a conversation. I cry as I wonder and wish things could stay that way but I know they won't, but as I have said before, when his mood and attitude is good, his physical state suffers so much. He will just make the biggest messes and walk off and not clean it up or drop something in the floor, look at it and leave it which he never did before. Dalynn got so mad at him yesterday, cause they had went fishing Sat. and it has litterally rained everyday here for a week and was raining sat. a little when they got home. Dalynn left donnie to park the truck and unload the boat...but Donnie left both windows down and it fell a flood and of course the truck was soaked. His movements have also gotten so much worse. especially when you are talking to him. He just jerks all over...I have had to start putting his medacine in one of those daily organizers cause last week I noticed he wasen't taking the right medacine at the right time. as sad as it is to watch him this way, its better than when he is mean to me.

Perhaps the times when he is loving and appreciative are the times when you can talk to him about those more difficult times. I have often told my husband that there were times he was very difficult to live with and for my safety and the kids safety, we did have him removed from the home for a while. Sadly, the insight just naturally isn't there, or as easily accessible as it is in a helathy person's brain. He probably didn't even notice or consider the consequences to leaving the windows open. His brain is lacking that relay station that process the "if I do this, then that will happen."

I found myself thinking out loud a lot to make sure my husband was able to follow my actions. He does better with some predictability. For example, one of his early "triggers" was if dinner was late. A little communication up front greatly helped. I'd say "I know you like dinner at 5, but I need to finish [this] first, and then I have dinner by 5:30." He was much better able to handle if he had some predictability.

I hope this might help a bit.
Patty

This weekend was a little crabby. I got up early and started working in the yard. I did a lot of what I had been neglecting cleaning up the weeds and loosening the dirt in the flower beds. It was hot and I felt really goid about how much I had gotten done. The kids and grandkids who live up the street came over to swim about 1. I had been working away about 5 hours by that time and started putting my tools away. I went and woke Dave up and told him the kid were there. He got up grumpy, but came outside. I left a bottle if Miricle grow on one if tge tables he sat next to. i cane in to fix some drinks and he comes in and says i cant believe you left chemicals out there right where the kids might get into them, thinking it was a drink. Are you trying to poison them!
I sort of laughed, and walked past him went out, got the bottle and put it in the garage. In our other life he would have picked it up and put it away, but now he just got up and left it, yelled at me, and then was grumpy all day. Seems like such a small thing, i didnt even know they were coming over(the kids are old enough to know not to drink Miracle Grow) and he never even commented on the yard.
It's just not ever going to be the same as much as we wish it would be. I just learned to stop fighting him, and go about my days. I can tell by his face when to just steer clear, bite my tongue and take MY meds. Seems to always be better by the next day and I got really tired from hanging on to things when he sometimes doesn't even remember the situation or that he was acting up. It's lonely, but quiet and calm. Im making peace with that part.

Thank you Patty.....I wish I could put into words like you and Vicky do how Donnie does or how I'm feeling....I always feel so blunt and cold with my post. When Donnie is "normal" like he is now....he is very sorry, and he tells me so and we do talk about it, but then when he has an eppisode....he forgets all that and everything is everyone else's fault...as I'm sure you have experienced this. I have a friend that really made a statement the other day to me that was so true...they said " our hearts are dying while their brain's are" and that is just how I feel.
It helps me so much to post on here cause noone I know really understands what I'm going thru...people will ask "how is donnie" and when I tell them its like I'm telling a story out of a twighlight movie...its hard to believe.

I am fortunate to have a background in working with people with brain injury. The staff went through a program called Non-violent Crisis Intervention. I still to this day remember and use some of those techniques.

Basically, you as caregiver need to accept that this is no longer a level playing field. He will not consistently respond and reply in a fair or logical or reasonable manner. You can appreciate the times when he does. You can approach him to "talk" when it seems he is having a calm period, but you will likely not be able to stop the freight train from rolling through your living room when he is on a roll. The best response you can do, like Vicky says, is to step out of the way. I am NOT saying roll over and play dead or let him walk all over you, rather stand your ground, but do not engage. You won't be able to redirect that thought if you are fighting back. Calmly say that he can't treat you that way, remind him that you are there for him. Don't show him your anger. He will calm down. You have to trust that.

Use your communication style to de-escalate his rage. 90% of all communication is nonverbal. Relaxed facials(not necessarily smiling, or you might be mistaken for laughing at him.) Calm voice. Calm movements. "Hey, let's sit down and chill for a minute." It takes incredible self control at first, but trust me, you definitely have more than he does.

On calmer moments, I was able to plant this thought in him, and I bring it back when he is upset or feeling down. He is not the only one affected by HD. We are going through this as a family. I am on his team. It sounds corney, but it is true, everything I do, I do for you. (cue music...)

Even though our relationship has evolved, we tell each other every single day that we love each other and I hope he has had a good day. He is usually able to say yes, he has had a good day. He now thanks me copiously for every little thing I do. He knows that my love for him is strong, even as HD is taking his skills, and I will be there for him.

It took a lot of work to rebuild that trust after I had been separated, and he hospitalized for a year, but we did it. Good luck. It is hard work, but well worth it.

Patty

So sorry Vicky...I know just how you feel but we both know that you'd never put your grandkids in any danger... Donnie is the same way....his way of dealing with stuff now is NOTHING like what it used to be. He used to be the MOST laid back, easy going, never let anything get him upset person you'd ever meet, now the least little thing can set him off for days. I hope things get better for you if only for a few days.
Patty, yes you are very lucky you have that background.....I am not that way and I wish I was...I have NO bedside manner or patients for people when they are mean to me...my reaction is to be more mean...and I know that is wrong of me.....I am praying so hard to be different.
Donnie is still doing good mood wise, but as you know I'm from Tennessee and it is in the 90's this week and Donnie works outside and I can really tell how much it is draining him physically...He loves his job and has always been such a hard worker I dread the day he can't work anymore and I think it will be sooner than later. I was sitting on the couch last night and he came and laid his head in my lap and and as I rubbed his hair I just sat and cried cause it' like I am mourning his death and he's still here...I can just see him slowly leaving me...( does that make sense?).....that's the man I will miss....that I already miss....
Liz

Liz,
I wanted to let you know I"ve been reading your story and finding it very useful. Thanks so much for sharing your journey.
Kathleen

Kathleen. I feel like my story is something out of a twighlight movie....one extreme to the other....Patty and Vicky on here are sooo helpful.
Liz

Liz, read more of your story and comments from Patty and Vicky and others and am learning a lot. Last week when I first got on the site someone (I'll look that up and find out who and thank her again) commented about my own comment that I was sort of a "get er done" kind of gal and said that 'sometimes you just have to accept.' Of course, I knew that, but her comment made me examine my responses more deeply and watch myself and see how I dodge depression by taking action.
Taking action is a life affirming response on my part, at least, but I hadn't fully examined the extent to which I use it as a dodge. I'm noticing, now, how I want to immediately take on other projects (building, gardening, learning a new skill, etc.) when my son is trapped in a depression. I was a journalist most of my working life, and intently chasing down information and brainstorming solutions to problems is something I'm both temperamentally suited to and trained to do. But, I begin to see that in my non-journalist life this news-hound-on-the-scent get er done way is not just life affirming action -- it is also me getting busy on something that requires my full attention. And sometimes my projects are ill-considered and end up taking up more time and resources than I actually have.
I'm trying to see how my life (and my son's) can be lived without HD being the defining factor of our existance (or the trigger for ill-considered activity). My son very much wants his life to be something other than one long response to HD.
That will all be in the framing of the experience and it might take some amazing creative definition to frame this. But, I want to get to a place where HD is the weather: can't be ignored, can't be controlled, definitely affects one's daily plans, but doesn't define one's entire life - other than the occassional monsoon or tornado, and we can have plans for those just like people who live in tornado country have plans.
I should say that I've lived through three house fires (arson, electrical, and accidental, in order) that had nothing to do with me or my son, with pretty much a total loss in each, so I do know about catastrophe. Also lived downstream of a rather famous dam failure that wiped out a lot of the town and livelihood of folk back in my 20's. I'm not just talking. I've walked the walk. And these experiences also no doubt contributed to the 'just get er done' response. And I have two siblings with pretty sever Aspergers. So, I know about long-term management.
Sheesh, reading this over it seems I've been trained for this last, long run of the gauntlet. Let's see if I learned anything.
K

I was just re-reading some of the stories on here....It's unbelievable that it will soon be a year that Donnie was diagnosed. As bad as it's been, I know that we are nowhere near where we will be with this awful disease.
I feel like I always post the bad side of our life together but the past few weeks have been so good emotionally.
No sudden outburst of anger, he's been nice to me and to the boys, not aggitated or easily upset. He's been so loving and helpful (as much as he can)
He even hugged me yesterday and said " Isn't it good that I'm not that mean person to you anymore?" It is so sad cause he remembers how he acts and he acknowledges that he was wrong, but when he is having an episode, you cannot reason with him or make him stop.
He has always been so good to me that it is so hard for him to wrap his head around that he could be mean to me.
on the flip side of that.....and I have really been able to distinguish how the HD affects him in that when he is nice, he can barly walk accross the floor or rember anything and his movements and jerks are so much worse. His balance and corodination is awful. He is easily tired and requires lots of rest and help in every-day chores.
When he is mean.....all of the above goes right the opposite, he remembers how to do stuff and can work all day long without any trouble....has anyone else noticed that about their self or their spouse?
All that matters is our home is calm right now....even tho we have to do more for him and be more patient with him, its worth it. sad, but worth it.

So thankful things have been calm. I have mentioned this before, but it is so noticable that I just have to report it again. When Dave was on Zoloft he had lots of energy, but was completely manic. The criticisms, the spending, the judgements, the movements, the falling, the yelling, cussing, blaming, anxiety, swallowing, coordination...all of it was horrible and mimicked late stage HD. When they changed the zoloft with Lexipro, everything got so much better. Now they changed to Paxil, and after a few crabby days, he's better now. The only issue we really have right now is sleepiness. He stays up late and sleeps most if the day. He isnt too interested in doing anything besides watching TV. Hoping to get into an extended release movement med study, to see if that will help.
Maybe Donnie 's meds are helping with the outbursts and the trade off is the side effects , sleepy, tired, balance, etc?
I'll take that trade off any day rather than what was going on with the boys and you!!
Hope it stays that way for you for a long time! Its hard to accept, i know you probably still have your guard up, thinking it could change at any minute and the outbursts and accusations return. For now lets just say it is answered prayer and trust that it is!

Yes Vicky, I am also very thankful for the peace we are having right now, and yes I do have my guard up cause I think, the least little thing could set him off...sometimes I find myself holding my breath waiting to see how he responds to something. We tried the Lexipro, and it was either that or the accident he was in that made him go into a mad rage.....so we switched back to the Zolaft....he is on 200mg. a day...plus 6 other medications. I don't know what the mg limit will be with the Zolaft. I'm almost afraid to ask if you know what I mean. Has the Dr told you what "stage" your husband is in? when donnie was diagnosed his dr said from everything he could tell he was well into the "middle stages" I still struggle to know what that means. I can almost see Donnie progressing daily...and that scares me to death. for example, carrying on a conversation with someone is almost impossible for him, he cant cordinate his words and forgets what he is saying, I think its because he gets nervious. He has been getting worse with me when he tries to talk to me.. he struggles to get his words out and gets confused about what he is saying and forget what he's saying, and he will start jerking really bad, the more nervous or flusterated he gets, the worse he moves. Is he still in the middle stages? beginning of the late stages? Its so hard to tell. I know everyone progresses differently so that makes it almost impossible to know.

At one point we thought mid stage, but I think since the medication straightened him out, he is really in the beginning stage. He does have severe chorea and without the xenazine he would be an exhausted mess. No one really has speculated what stage he is in, and since so many people have a drastically different journey, i am still surprised they even have stages documented...
With the right meds, it almost seems doable. It's still horrible, but it feels like there is room to breathe and he seems to feel better which in turn makes him act better and makes it seem like we have more time somehow! Not just time, but more normal days without this hovering, controlling everything we do and say and feel!

Well It's been well over a month now and Donnie is still doing good (mood wise) knock on wood. I have been on vacation for the past 2 weeks so I havent written. We had one episode on July 5th. we were camping and Donnie had ran out of one of his medacines. he had not taken it for 3 days and we got it filled on Sat. it was a night medacine, but on sat. about lunch time EVERYTHING CHANGED. He got sooo mean. He started yelling at me and Dalton for no reason and just got manic and worse. He took my keys so I couldn't leave. I almost walked to where I'd have cell service and called my mom but I didn't. Dalton stayed at a friends camper that night. He finally went to bed and I slept in another bed. I was so mad at him that night. he took his medacine. when he woke up the next morning, it was like a different person. he was so nice and appoligized to me and Dalton and was very sorry for the way he had acted. So I guess this was a result from not having his medacine cause he's been good ever since.

The last 3 weeks Donnie has been getting choked/strangled alot on his food....I have read that it is also one of the symptoms of HD....is there anything anyone can tell me about this? any experiences you have had with this?
Liz

It's called dysphagia and yes it's a symptom. Changing the texture of his food and drink will probably help. Has he seen a speech language pathologist? An SLP will assess his swallowing and make recommendations that will help manage the problems. An occupational therapist is important too as they will be able to recommend appropriate adaptive equipment when needed.

Thank You Lisa. No he has not seen any specialist yet. We go back to his neurologist this month and I was gonna talk to him about it.