Lately my days are oh so long and depressing. My husband with hd 12yrs now is at a place I just dont understand. He only thinks of cigarettes, food and bed. I have a diaper on him now because he wouldnt tell me when he has to go. The toilet is such a taboo with him. He fights me over it. Lately he will tear his brief off hid it and continue to walk thru the house and let fecal matter come out the bottom of his pant legs and not say a thing. Sometimes a couple time a day. He doesnt seem to care about my feeling or what I go through with his decisions. He doesnt speak well I believe out of choice. When he's angry he speaks loud and clear. I get so angry at times. That I go out back and cry. Then start all over again with things. I dont get to get out much. When I do get to go out he chooses to go to bed until I return. He said he gets angry at me for leaving him home with his son. He follows me where ever I go in the house.
The hardest part is no one comes around anymore or even calls. I hate this dam disease and all the dreams it has stolen. Sorry to vent but very hopeless lately.

Muchgrace, I'm so sorry you are both having to go through this. It takes someone special to care for anyone with such a disease and I would say you are very special. I can't offer much in the way of advice but I want you to know I am thinking and praying for you both. Try to keep your chin up.
Mike

Please remember to take care of yourself... maybe a hursing home would be a good option. This situation sounds as if it's getting too difficult.

I am not at that place yet and I hope my hubbys HD doesn't take him there, God Bless you sweetie, this is a strange disease, do what you can for yourself, please !!

Oh I hate this disease and what it does to our loved ones and to us. Muchgrace, the decisions we must make in the face of HD often put us between a rock and a hard place. It seems like we have to choose not between good and bad options but between bad and worse than bad options. I also hear you about no one coming around or calling...a wise person dealing with 3rd gen HD in his family told me when I first started this journey that your friends and family will fall away because they just can't take it. I have experienced that except for my husband and my sister and brother-in-law and I worry all the time that they too will become unable to hang in there. So I find myself telling them that if they need to not take my calls or if my husband wants to get out of this marriage now it's okay, that I understand, but inside I am terrified that they might just take me up on it. Caregivers need so much support and for most of us it is just not there. I know that hopeless feeling and I wish I could make it better for you and all of us. So I'm sending long distance love and support out to you. Try to develop something just for you and go to it...I know it's hard to even do that.

Take care,

Carla

Try to take one day at a time. The actions of your husband are the disease and not him. Try not to take it personally.
You also need to get out once in awhile. If he is able to stay home by himself (it looks like that is what he is doing) I would continue
to get out. Maybe join an activity you enjoy once a week. There you would be getting out and interacting with other people which is good.
I would talk to a neurologist and see if there are any medications that may help him..

On his bathroom issue I would tell him he either needs to let me know when he has to go or wear something to help. I would give him
no option. If you need help convincing him of this maybe a dr or neurologist could help you. Also, there are products that are basically
disposal mens underwear rather than diapers. Maybe he would handle these better.

As in previous posts suggest do take care of yourself as well.

Thank you all for your input. I so appreciate it. Ive been on this road personal for over 12 yrs. Now. I saw the entire road with my father inlaw.
Plus Ive been working in medical for over 35 yrs. Nothing new under the sun. But when its this close to you sometimes you cant see in front of your self. Thank Goodness all days arent bad just some. Its those days I so wish there was someone to talk to. But we make it through. At this point no dr or neurologist can help. No meds will help. Been there done that. As for brief or diapers. I use both as needed. I really step back once in awhile even if its reading out back. You all are such jewels, precious really. Muchgrace to you all.

Muchgrace maybe you need a caregivers day out?????? Really, can you plan some time for yourself? You both probably need it.

I also want to say how much I appreciate the post I see here about caring for your loved one with the disease. It is uplifting to me personally. I may or may not get to the point some are but there is a fear that there won't be someone like you folks there. I know better because my wife has be a saint with all of this. Even when I had to leave work. Prayers to all of you.

Mike