Hi everyone, I am here to share and hopefully get some advice on how to treat the situation I'm in now.

Many people on this forum have given me some great advice in the past, and all has helped very much. So thank you always for listening and supporting me/everyone here.
My situation is by no means as bad as a lot of individual's I've read about, but the disease is still present and we do have very difficult times.

I have become a much stronger person over the last few years, and I have also lost a lot of myself. I've learned that it's not me, or him, but the disease that comes between us. We get along better, even came to an agreement a few months ago to not be mean to eachother, and to accept a fight and settle it fairly. We listen well to eachother. I am able to better identify what sets him off, and avoid anything that will trigger his anger and upset.
BUT, it does seem that his needs are more important, 'on the front burner', and mine have been forgotten, ignored, even cease to exist.

Does anyone else feel their relationship is one-sided?

He does really do a lot for me, but it just seems, whether toward me or another one of his family members, he is always looking out for himself. He doesn not blame HD for anything, he blames everything on me actually!

Things happen that we don't expect or cannot control, yet everything is still "my fault". I know it's actually not, but in his mind it is, and he is always "right". This time, I cannot break the barrier of his silent treatment.

How can I break in to explain my feelings and opinions? Seriously - do my opinions and feelings even matter right now?

How do I approach a conversation when I am not getting ANY response to even "hello"? Do I have to continue to be ignored until it is comfortable for him to talk!? Just doesn't seem fair. I have not gotten mad or yelled, only spoken with a soft but firm voice, and still no response.

I would love to know what he is thinking and how he is feeling and what he needs to hear from me. Okay, alright already, we had a fight and we're mad at eachother, but I cannot get him to respond, only turn his back. This is not fair to me, but it seems it doesn't matter how I feel. He is acting like a teenager, when we are both in fact in out mid-30's!

The topic of HD has come up only a few times, but I don't feel it's taboo. One thing he did say about the disease once was "well it's not really so bad" (meaning he sees a lot more debilitating diseases at his job) But for me - it is "that bad".

Should I mention it this time and say "this isn't you, it's the disease" and "don't let the disease win"??
I'm afraid that if I blame it on the disease he will just say, "well, I should die" and I'm very scared he may go along with it.

I don't want him to think he cannot battle this disease. I don't want him to feel like he is a failure at his relationship with me.

My husband and I celebrated our 26th wedding anniversay yesterday and not once did he say Happy Anniversay or I love you. No gifts or flowers for years. Verbally, he communicates very little to me, and rarely establishes eye to eye contact. I can't remember what it's like to be kissed or to have my hand held, or even hugged in earnest by my husband. I do know, however, that up until 8 years ago he truely loved and respected me. I hold on to those memories and remind myself of those as often as possible.

My role in his life now is primarily as caregiver. I make sure he eats, takes his meds, goes to exercise class, and keeps himself clean. I try to keep the house clean and make sure the bills are paid, staying on top of the mundane day to day stuff. I invite him to run errands with me and am happy when he agrees to come along. He likes to eat out at restaurants which we try to do a few times a month. I invite family to come with us so that I have some companionship, because he rarely engages in conversation.

I continue to talk to my husband about the kids, family, household, news, movies, just as I did before he was sick. Sometimes he responds, most of the time he does not. I know he listens but has difficulty responding verbally because later on he will mention something I said or ask me a question about it. Cognitively it takes him a long time to process information and I've learned to be patient when I have to repeat conversations several times before he responds. He may not express his feelings or emotions outwardly, but when I married him I made a sacred promise to love and care for him in sickness and health. I take that very seriously. I know if I were the one with HD, I would want him to do the same thing for me.

I keep life as routine as possible because any behavioral issues we've had were due to changes or interruption to the status quo. I make many concessions because I know he is unable to. As long as it's not going to cost a ton of money, I do whatever I can to give him what he wants (i.e. fast food hamburger every day for lunch -yuck). I rely on my family (mom and dad especially) and a couple of close friends to be my sounding board when I need them. I've returned more fully to my faith and believe that God is providing me with the strength I need to care for him in a loving and patient way.

The hardest thing for me was grieving for the husband I used to have and knowing I will never have that again. Most couples have to deal with this if they live and are still married when they are in their late 70's or 80's. It is not unusual at that age to have dementia, memory loss, etc... Our unique situation is that our spouse has a brain that mimic's an 80+ year old, but we still have minds and bodies in our 30's and 40's. It's difficult to adjust to, it took me 3-4 years to figure it out, and I'm still making adjustments as my husband continues to slowly decline.

You are not alone. We know what you are going through. We care. Hang in there!!!

I feel as if every thing I have, including my life, if just "rusting" away as I take care of my wife.

I use the word rusting because all of my hobbies/projects (this includes two sports cars) are either in storage or stacked under a shelter to make room for the wifes ever increase pile of things that she must have.

I have quit even responding to "aurguements" there is no need and any attempt to state my concerns only make the situation worse.

If something goes wrong, it is my fault

Djcloc,

Our 26th wedding anniversary was on 8/16. Happy anniversary!!
My husband's home health aide drew a card for me and she had him scribble with crayons on it for me. That was nice as every year prior I save the anniv, b-day or mother's day card from years ago and i let him give me the same card every year. That way he feels like he gave me something. But, this year a fresh crayon scribbled anniversary card was priceless!


Jennie97,

You said it multiple times, his actions are not fair. Life isn't fair and certainly not HD.
Unfortunately, to keep your frustrations at a minimum, i would also keep your expectations at a minimum. You will have to be the "giver" in this relationship and expect very little in return. Believe it or not, in a strange sort of way, there is joy in just being the giver, if you learn to accept that as your role now.

Lizzieann

Thank you for your insights and sharing your experiences!

It is nice to get an understanding of other people's situations in order to have something to compare your own to. I guess that's the whole point of this group!

Just, I have to say, that sometimes I go through times I am in denile of the disease, and end up believing it's the person, his personality, that is giving me grief. A question that comes to mind is "how in the world can a disease choose who to get angry or nasty with!?" I don't know of a disease that is able to choose anything! I become very bitter and confused.
On the whole, the scariest part, and the reason I am so patient with the behaviour is not only because I have chosen to accept the disease, but because I want to walk on egg shells for fear that he will become more depressed or attempt/ succeed at suicide. Of course it is not my job to stop it, but I certainly wouldn't want to be the trigger.

djcloc, Happy Anniversary! You are a very strong and brave woman, and I'm sure you have a great sense of humour and outstanding confidence. I admire you!

JFB, I hear you, and feel the same. But I'm sure you know it's not your "fault". Avoiding the arguements helps, and I have found that sometimes during his "up" moods, I am able to bring up the same situation, not in arguement fashion but asking questions and stating my feelings...this is the time when we are most likely to come to agreements rather than arguements, but of course everybody's situation is different.

Lizzieann...thank you, you are right, life is not fair, and sometimes we need a forthright answer like this. I can see that this could be helpful too, especially for newbie caregivers, to know exactly that - caring and giving for another can bring joy.

Ladies; thank God there are spouses like you. The shoe could have been on the other foot. Be strong. I wish I could help with advice.
Mike

Jennie, I hear ya girl !!!!! I don't get the silent treatment anymore but when I did it lasted for many years, sometimes 3 or 4 times a week,before we even knew about HD.

Now He is into the yelling in public at me.

I too feel I'm not being noticed, everything has to do with him, if I bring something up about me he changes it to him.
I truly hate HD!!
I am a caregiver/wife, I live in a small town with zero support so I am alone, no one visits me anymore because of his behavior and I feel I am not a good caregiver anymore because he does things behind my back...like...calls for meals on wheels because I guess I don't feed him. I do feed him, he is fat. The things he says to me, the put downs, bad behavior, I feel so little.
I have lost myself but I keep pushing on!!

This nightmare disease turns our loved ones in to other people!! Not the person we loved when we got married or became partners. My Husband and I have been married for 35 years. For the last 10 or so years he has been sick with H.D. I am his full time caregiver. I will care for him till the end. There are many rough days and nights. But I have learned not to argue or do anything that I know will upset him. We have a handsome 3 year old grandson named Jack and a beautiful 1 year old grandaughter named Penelope. My Husbands face just lights up when the babies are around him. (And they are here with us alot) My only goal each day is to try and give my Husband a good day and make good memories for our grandbabies. He is only a shell of the man I married, through no fault of his own. The old cliche' "Till death do us part". We just have to take one day at a time and do the very best that we can do!!!! I hope and pray that one day there will be a cure!!!

djcloc I am reading your comment its like reading my life so far Aniversary just went by I did asking do you want to go out and eat and remain him about our 25th aniversary and he said no thank you, he got his dignostic three years ago two melldows but it seems he is doing better with new medication the only thing is that he does not want to talk , doctor tolds us that if he does not want to talk to not bother him because we stress him up so we just let him be. I miss him so much and I keep praying to God to guide me to do everything that I need to do for him, he has always been such a good father and husband but like you said I keep thinking in our wonderful memories thats what it keep me going . God bless you guys.

Oh i cried when i read the part of the crayon on the card .How precious is that.
As caregivers i think we learn to just admit defeat ,i stopped argueing back for years ,no good ,all my fault all of it.
He blamed everything on me,we learned to work around it.
I dont know how much this changed me as well ,cause i believe it did.I was mentally damaged because of this disease and probably ,so were the kids.
My husband also was very compulsive and had huge grandious or how ever you spell that.
Months before i placed him we went through some very terrifying experiences ,but he was under 24 hour watch by at least one family member at all times.We were not able to get home support nor could we afford it.
I would get calls at work all day,Mom dads standing on the side of the road his pants are almost off cause the weight of the urine was pulling them down,when i got home i say what are you doing in a panic ,and now what attitude,snarl at him sternly and say get in here,and then i would have to try and redirect him with lies and promises the i hoped he would forget.REALITY was not an option for years.
We did this everyday over and over,once he was fixed on something no stopping him.
For months he made me call his mom about 6 times a day got it in his head she just died,he had to hear her voice,but an hour later to do it all over again,and if she didnt answer omg ,grandma on speed dial ,in between cooking dinner .
I can still see the old him in there,i get kisses if i ask for them,but for years no kisses ,no hugs ,no loving ,just a man trapped in his own mind,i believe he doesnt see his own disease the dementia took over early or psychosis i would call it,so i guess that is a blessing for him.
He stares at me for hours now ,i know he is thinking when he does that,but what i dont know,but when our eyes conect i smile at him ,but he doesnt smile back ,he is just emotionless.
For better or worse was a promise i made ,not leagally married on paper nope ,but in the eyes of God hes mine and in my heart too.
One day i was driving home and i had just cleaned him ,and the smell of his soap was lingering on my hands,here i was crying in the car and all of a sudden i smelled the soap,it comforted me and the smell told me its okay ,was kinda like a hug from up above.
Hold on to the little things ,the memories ,the smiles ,the smells,the cards,as care givers we have learned to be greatful for the calm and serenity of just sitting in a chair and our world stops for just that moment.

God bless you! I just read your blog and I can truly relate!!!

My husband is 52 years old and hardly speaks at all due to his HD. His family and friends have given up on him. So sad......

Since they have found out he has HD and the way he is now (compared to what he was before) nobody seems to want to come around anymore because they "can't handle" how he is now. They just want to remember him how he " used to be ". They are selfish and are cowards.

Any advise on how to handle "so-called" "family & friends"??????

It's hard enough to take care of a husband with HD, especially when he is on disability and I am not employed at this time. Lost my job recently. Bad times.......